{"id":4746,"date":"2016-10-20T20:09:43","date_gmt":"2016-10-20T20:09:43","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=406"},"modified":"2026-03-27T08:21:18","modified_gmt":"2026-03-27T12:21:18","slug":"meet-the-kids","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/id\/meet-the-kids\/","title":{"rendered":"Bertemu Anak-Anak"},"content":{"rendered":"<p>[et_pb_section fb_built=\u201d1\u2033 lebar_penuh=\u201daktif\u201d dinonaktifkan_aktif=\u201dnonaktif|nonaktif|nonaktif\u201d _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d0px|0px|0px|0|false|false\u201d lebar_batas_batas_bawah=\u201d55px\u201d warna_batas_batas_bawah=\u201d#29327a\u201d terkunci=\u201dnonaktif\u201d info_warna_global=\u201d{}\u201d][et_pb_fullwidth_header warna_hamparan_latar_belakang=\u201drgba(0,0,0,0)\u201d _builder_version=\u201d4.22.1\u2033 fon_judul=\u201d|||||||||\u201d title_font_size=\u201d55\u2033 background_color=\u201d#29327a\u201d background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/bubbles-header.jpg\u201d background_position=\u201dbottom_right\u201d custom_padding=\u201d11.5vw||11.5vw||true\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d|56px||\u201d custom_padding_last_edited=\u201ddi|desktop\u201d title_font_size_tablet=\u201d45px\u201d title_font_size_phone=\u201d40px\u201d title_font_size_last_edited=\u201ddi|phone\u201d z_index_tablet=\u201d500\u2033 custom_css_main_element=\u201dbackground-position: center !important;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<h1>Bertemu Anak-Anak<\/h1>\n<h1>&amp; Dewasa Muda<\/h1>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 gunakan_talang_khusus=\u201daktif\u201d lebar_talang=\u201d1\u2033 spesialisasi=\u201daktif\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201daktif|desktop\u201d kelas_modul_1=\u201dnavigasi-sekunder-bilah-sisi\u201d kelas_modul=\u201dcetak-tangan-bg\u201d versi_pembuat=\u201d4.22.1\u2033 gambar_latar_belakang=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png\u201d paralaks=\u201daktif\u201d metode_paralaks=\u201dnonaktif\u201d lebar_dalam=\u201d95%\u201d lebar_maks_dalam=\u201d100%\u201d bantalan_khusus=\u201d0|0px|54px|0px|false|false\u201d indeks_z_tablet=\u201d500\u2033 lebar_batas_atas=\u201d10px\u201d warna_batas_atas=\u201d#8fd2ed\u201d gunakan_lebar_khusus=\u201daktif\u201d satuan_lebar=\u201dnonaktif\u201d persentase_lebar_khusus=\u201d100%\u201d info_warna_global=\u201d{}\u201d][et_pb_column jenis=\u201d1_4\u2033 versi_pembuat=\u201d4.16\u2033 bantalan_khusus=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_12\u2033 dinonaktifkan_aktif=\u201daktif|aktif|nonaktif\u201d kelas_modul=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 gaya_animasi=\u201dmemudar\u201d z_index_tablet=\u201d500\u2033 lebar_batas_kanan=\u201d5px\u201d terkunci=\u201dnonaktif\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=&#8221;3_4&#8243; 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custom_padding=&#8221;|20px|||false|false&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; text_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; text_text_shadow_vertical_length_tablet=&#8221;0px&#8221; text_text_shadow_blur_strength_tablet=&#8221;1px&#8221; link_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; link_text_shadow_vertical_length_tablet=&#8221;0px&#8221; link_text_shadow_blur_strength_tablet=&#8221;1px&#8221; ul_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; ul_text_shadow_vertical_length_tablet=&#8221;0px&#8221; ul_text_shadow_blur_strength_tablet=&#8221;1px&#8221; ol_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; ol_text_shadow_vertical_length_tablet=&#8221;0px&#8221; ol_text_shadow_blur_strength_tablet=&#8221;1px&#8221; quote_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; quote_text_shadow_vertical_length_tablet=&#8221;0px&#8221; quote_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_2_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_2_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_2_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_3_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_3_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_3_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_4_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_4_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_4_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_5_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_5_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_5_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_6_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_6_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_6_text_shadow_blur_strength_tablet=&#8221;1px&#8221; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<h4>Selamat datang di keluarga Progeria kami yang sedang berkembang<\/h4>\n<p>Di bawah ini, kami berbagi sekilas kehidupan anak-anak dan remaja penyandang Progeria di seluruh dunia. Anda akan melihat betapa cerdas, energik, berbakat, dan ambisiusnya anak-anak dan remaja ini \u2013 semuanya dengan harapan dan impian akan masa depan yang cerah. Kami harap kisah mereka menginspirasi Anda untuk mendukung PRF, agar impian tersebut dapat terwujud.<\/p>\n<p>Per Maret 2026, di sinilah terdapat 157 anak dan remaja dengan Sindrom Progeria Hutchinson-Gilford (HGPS), semuanya dengan mutasi penghasil progerin pada gen LMNA; dan 84 orang dalam kategori laminopati progeroid (PL), yang memiliki mutasi pada jalur lamin tetapi tidak menghasilkan progerin; di total 52 negara.<\/p>\n<p>Bahasa Indonesia: [\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner struktur_kolom=\u201d1_2,1_2\u2033 bantalan_khusus_terakhir_diedit=\u201dpada|desktop\u201d bantalan_kiri_kanan_tautan_1=\u201dsalah\u201d bantalan_kiri_kanan_tautan_2=\u201dbenar\u201d _builder_version=\u201d4.16\u2033 margin_khusus=\u201d|10px|||salah|salah\u201d bantalan_khusus=\u201d39.0156px|0px|0px|0px|salah|salah\u201d bantalan_khusus_tablet=\u201d0px|35px||35px\u201d bantalan_khusus_ponsel=\u201d0px||0px\u201d arah_animasi=\u201dkanan\u201d info_warna_global=\u201d{}\u201d][et_pb_column_inner jenis=\u201d1_2\u2033 tipe_kolom_khusus_yang_disimpan=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|20 piksel||\u201d bantalan_khusus_tablet=\u201d|0 piksel||0 piksel\u201d bantalan_khusus_ponsel=\u201d||30 piksel\u201d bantalan_khusus_terakhir_diedit=\u201ddi|ponsel\u201d info_warna_global=\u201d{}\u201d bantalan_khusus__hover=\u201d|||\u201d][et_pb_text _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||15 piksel\u201d bantalan_khusus_tablet=\u201d\u201d bantalan_khusus_ponsel=\u201d\u201d bantalan_khusus_terakhir_diedit=\u201ddi|desktop\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<h4>Hidup Menurut Sam<\/h4>\n<p>Di bawah ini, dapatkan sekilas kehidupan beberapa anak yang ditampilkan dalam Dokumenter HBO <strong><a href=\"https:\/\/www.progeriaresearch.org\/id\/life-according-to-sam\/\">Hidup Menurut Sam<\/a><\/strong>, dan masih banyak lagi dari seluruh dunia!<\/p>\n<p>Bahasa Indonesia: [\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=\u201d1_2\u2033 saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|20 piksel|30 piksel|20 piksel\u201d bantalan_khusus_tablet=\u201d|0 piksel||0 piksel\u201d bantalan_khusus_ponsel=\u201d\u201d bantalan_khusus_last_edited=\u201ddi|desktop\u201d global_colors_info=\u201d{}\u201d bantalan_khusus__hover=\u201d|||\u201d][et_pb_video src=\u201dhttps:\/\/www.youtube.com\/watch?v=aOB3ltOeK9I\u201d sumber_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/VideoThumbnail.png\u201d _builder_version=\u201d4.22.1\u2033 custom_margin_tablet=\u201d\u201d custom_margin_phone=\u201d||15px\u201d custom_margin_last_edited=\u201ddi|desktop\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d\u201d custom_padding_last_edited=\u201ddi|desktop\u201d animation_direction=\u201dkanan\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_video][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/March-2026-Map.jpg&#8221; title_text=&#8221;March 2026 Map&#8221; align=&#8221;center&#8221; admin_label=&#8221;Map&#8221; _builder_version=&#8221;4.27.5&#8243; vertical_offset_tablet=&#8221;0&#8243; horizontal_offset_tablet=&#8221;0&#8243; width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px|0px|0px||false|false&#8221; custom_padding=&#8221;|20px|||false|false&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;0&#8243; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_image][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=&#8221;undefined&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;12px|35px|39.0156px|0px|false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; border_width_top=&#8221;10px&#8221; border_color_top=&#8221;#8fd2ed&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;undefined&#8221; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Di bawah ini, pelajari tentang anak-anak yang ditampilkan dalam Dokumenter HBO, <a href=\"https:\/\/www.progeriaresearch.org\/id\/life-according-to-sam\/\"><strong>Hidup Menurut Sam<\/strong>\u00a0<\/a>(difilmkan dari tahun 2010-2012) \u2013 Sam, Devin, Megan, Sammy, dan Zoey. Lalu, lihat sekilas kehidupan beberapa anak dan remaja lainnya yang memotivasi kita setiap hari.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][et_pb_team_member nama=\u201dSam Berns\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sam_Brochure-2010MTK.jpg\u201d label_admin=\u201dSam\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Sam meninggal pada tanggal 10 Januari 2014. Ia berusia 17 tahun. Film ini menunjukkan Sam pada usia 13 \u2013 15 tahun, dan kami sangat bersyukur bahwa film dokumenter pemenang penghargaan ini akan memungkinkan dunia untuk mengenal orang yang luar biasa ini dan warisan cinta, harapan, dan inspirasi yang ia berikan kepada dunia. Sam menikmati banyak hal, termasuk musik, buku komik, dan menonton tim olahraga Boston kesayangannya bermain. Ia meraih penghargaan akademik tertinggi, menjadi pemimpin bagian perkusi di band sekolah menengahnya, dan meraih pangkat Pramuka Elang di Pramuka Amerika.<\/p>\n<p>Sam berbicara di depan umum mulai dari usia 4 tahun, tak lama setelah orang tuanya mendirikan The Progeria Research Foundation, termasuk pada usia dua tahun.\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/id\/tedx-talks\/\" target=\"_blank\" rel=\"noopener noreferrer\">konferensi TEDx<\/a>Tepat satu dekade setelah menyampaikan ceramahnya pada bulan Oktober 2013 tentang filosofinya untuk kehidupan yang bahagia, ceramahnya melampaui <strong>100 juta tampilan lintas saluran<\/strong>, antara TED.com dan <a href=\"https:\/\/www.youtube.com\/watch?v=36m1o-tM05g\">TEDx<\/a>, dan tweet harian tentang bagaimana ceramahnya telah menginspirasi orang terus berlanjut. Sam diwawancarai di program televisi dan radio nasional, termasuk ABC Primetime dan NPR, membuat para pendengarnya terkesan dengan sikapnya yang fasih, jenaka, dan cerdas. Melalui <a href=\"https:\/\/www.progeriaresearch.org\/id\/life-according-to-sam\/\">Hidup Menurut Sam<\/a> dan ceramah TEDx-nya yang abadi, ia terus menginspirasi kita semua di PRF, serta jutaan orang di seluruh dunia.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dDevin\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/11\/Devin.png\u201d label_admin=\u201dDevin\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Selama pembuatan film <i>Hidup Menurut Sam<\/i>, Warga Kanada Devin Scullion berusia 14 tahun. Devin sangat senang terbang, dan apa pun yang berhubungan dengan pesawat terbang dan mekanisme cara kerjanya. Devin juga penggemar berat sepak bola dan suka menyemangati Hamilton Ticats. Ia mulai mengonsumsi lonafarnib melalui uji klinis obat PRF pada usia 11 tahun. Sayangnya, Devin meninggal pada tanggal 22 Januari 2017, pada usia 20 tahun. Menurut ibunya, \u201cMenjadi bagian dari uji klinis ini benar-benar membantu memperpanjang hidupnya; tanpa PRF, kami tidak akan memilikinya selama ini.\u201d<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dMegan\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MeghanN2023.png\u201d label_admin=\u201dMegan\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Selama pembuatan film\u00a0<em>Kehidupan Menurut Sam,<\/em> dia berusia 10 tahun. Megan kini berusia 24 tahun dan tumbuh dengan baik. Dia suka menunggang kuda dan senang membuat perhiasan untuk semua temannya.<\/p>\n<p>Megan adalah anak pertama yang mengonsumsi obat Zokinvy (lonafarnib) pada bulan Juni 2007 \u2013 itu adalah momen bersejarah! Jika jadwal memungkinkan, ia datang ke Boston untuk menjalani perawatan percobaan bersama temannya Merlin Waldron. Keduanya telah bersama-sama di Boston selama sebagian besar kunjungan percobaan mereka. Megan dan keluarganya ingin Anda tahu bahwa mereka memiliki keyakinan dan kepercayaan penuh kepada semua peneliti dan dokter dan tentu saja PRF: <em>\u201cTetapi orang-orang yang berharap kepada Tuhan akan menerima kekuatan mereka. Mereka akan terbang tinggi seperti rajawali; mereka akan berlari dan tidak menjadi lelah, mereka akan berjalan dan tidak menjadi lelah.\u201d Yesaya 40:31<\/em><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dSammy Basso\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Sammy-untuk-situs-web.jpg\u201d label_admin=\u201dSammy\u201d kelas_modul=\u201dprf-orang-modul\u201d versi_pembuat=\u201d4.27.2\u2033 posisi_font=\u201d|700|||||||\u201d warna_teks_posisi=\u201d#00B2E2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Orang tertua yang diketahui menderita Progeria klasik, penduduk Italia Sammy Basso meninggal pada bulan Oktober 2024 pada usia 28 tahun. Sammy dikenal dan dikagumi di seluruh dunia sebagai juru bicara PRF dan komunitas Progeria. Dia dan teman-temannya senang membuat proyek yang akan berdampak positif pada masyarakat, seperti membantu orang yang membutuhkan atau menyebarkan kesadaran untuk tujuan yang baik (lihat karya mereka dengan <a href=\"https:\/\/www.facebook.com\/sammyrunsbrenta\/videos\/2395154744030051\/?v=2395154744030051\" target=\"_blank\" rel=\"noopener\">Sammy Lari Brenta<\/a>, misalnya!) Pada tahun 2014, Sammy ditampilkan dalam Serial National Geographic Italia, <em>Perjalanan Sammy<\/em>, yang mengisahkan perjalanan impiannya: bepergian di Rute 66 di AS dari Chicago ke Los Angeles bersama orang tuanya, Laura dan Amerigo, dan teman Riccardo. Orang tua Sammy mendirikan <a href=\"https:\/\/www.facebook.com\/groups\/40213564765\/#_=_\">Asosiasi Progeria Italia Sammy Basso<\/a> untuk meningkatkan kesadaran, mendanai penelitian, dan menyediakan layanan dukungan kepada keluarga Italia yang terkena dampak Progeria.<\/p>\n<p>Pada tahun 2018, Sammy lulus dari Universitas Padua dengan gelar di bidang Ilmu Pengetahuan Alam dan menyampaikan tesis tentang pendekatan penyuntingan genetik pada tikus HGPS. Kemudian pada tahun yang sama, ia dianugerahi Knight of the Order of Merit of the Italian Republic, atas penelitian mendalamnya tentang disabilitas dan kemitraannya dengan pemerintah Italia. Pada tahun 2020, Sammy menjadi anggota gugus tugas regional dan nasional Veneto untuk pengungkapan informasi COVID-19 (fitur ilmiah dan influencer). Pada tahun 2021, Sammy lulus dengan gelar kedua di bidang Biologi Molekuler dengan tesis tentang persimpangan Lamin A dan Interleukin-6, sebuah pendekatan untuk mengobati Progeria dengan menargetkan protein beracun, yang dikenal sebagai progerin.\u00a0<u><\/u><u><\/u><u><\/u><u><\/u>Dengarkan Sammy dalam panel di STAT Breakthrough Science Summit 2021\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=HP8rbSm2gv0&amp;t=2s\" target=\"_blank\" rel=\"noopener\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3DHP8rbSm2gv0%26t%3D2s&amp;source=gmail&amp;ust=1630071558752000&amp;usg=AFQjCNExV968PKWOQ2PeCFNcRJvem3E2Eg\">Di Sini<\/a>.\u200b<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dZoey\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/ZoeyMTK.png\u201d label_admin=\u201dZoey\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Selama pembuatan film <em>Hidup Menurut Sam<\/em>, dia berusia sekitar satu tahun dan sekarang dia berusia 15 tahun! Dia suka sekolah dan punya banyak teman! Zoey suka menggambar, menulis, bertingkah konyol, bersama sahabat-sahabatnya, membantu ibunya memasak, dan dia sangat menyukai kelas senam!<\/p>\n<p>Zoey juga menggemari musik, bernyanyi, dan menari. Ia memiliki dua kakak laki-laki, Aidan dan Gavin. Mereka berperilaku seperti saudara kandung pada umumnya \u2013 mereka sering bermain bersama tetapi terkadang bertengkar tanpa alasan.<\/p>\n<p>Pada bulan Juli 2013 Zoey mulai mengonsumsi lonafarnib sebagai bagian dari\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/id\/clinical-trials\/\" target=\"_blank\" rel=\"noopener noreferrer\">Perluasan Uji Coba<\/a>, dan pada bulan April 2016, dia dan temannya Carly menjadi orang pertama yang mendaftar di sekolah baru tersebut, \u00a0<a href=\"https:\/\/www.progeriaresearch.org\/id\/clinical-trials\/\" target=\"_blank\" rel=\"noopener noreferrer\">Uji coba 2 obat<\/a>Selama bertahun-tahun, keluarganya telah memimpin PRF Cabang New Jersey, \u201cTeam Zoey,\u201d yang menyediakan dana penting untuk meneliti perawatan tambahan dan penyembuhannya. Ikuti Zoey di <a href=\"https:\/\/www.instagram.com\/team_zoey\/\">Instagram<\/a> Dan\u00a0<a href=\"https:\/\/twitter.com\/SupportTeamZoey\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>!<\/p>\n<p>Bahasa Indonesia: [\/et_pb_team_member][et_pb_team_member nama=\u201dMerlin Waldron\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Merlin2023.jpeg\u201d label_admin=\u201dMerlin Waldron\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 posisi_font=\u201d|700|||||||\u201d warna_teks_posisi=\u201d#00B2E2\u2033 margin_kustom=\u201d||45px||false|false\u201d bantalan_kustom=\u201d20px||||false|false\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_kustom=\u201dwarna: #00b2e2;\u201d lebar_batas_atas=\u201d8px\u201d warna_batas_atas=\u201d#8FD2ED\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Merlin adalah pemain cello dan biola yang berbakat, penggila perjalanan keliling dunia, penyair dan penulis yang menerbitkan karyanya, dan lulus dari Emerson College di Massachusetts pada tahun 2022 (untuk melihat sekilas kesuksesan buku mereka, klik <a href=\"https:\/\/www.youtube.com\/watch?v=agINH6jz3Ls&amp;list=PLio7GaXoQ3Shz1IbzLF1GkugQiDI0fMwR&amp;index=54\" target=\"_blank\" rel=\"noopener\">Di Sini<\/a>). Selama bertahun-tahun, Merlin menjabat sebagai juru bicara untuk Yayasan Penelitian Progeria di berbagai acara termasuk Lomba Jalan Raya PRF Tahunan, Lokakarya Ilmiah Internasional PRF, dan dalam berbagai penampilan di media.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dAlexandra\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/AlexandraMTK.png\u201d label_admin=\u201dAlexandra\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Alexandra adalah seorang gadis berusia 8 tahun yang ceria yang suka pergi ke sekolah, tertawa, dan bermain dengan teman-teman sekelasnya. Dia menyukai musik dan memainkan alat musik, dan dia sangat suka menari! Bahkan di luar sekolah tari, Alexandra menari di mana pun dia mendengar musik \u2013 di mobil, di toko, di supermarket\u2026 Dia juga suka berenang dan bermain di kolam renang, tempat orang-orang memanggilnya \u201cikan kecil.\u201d Di rumah, dia selalu bermain peran sebagai guru dengan semua boneka dan bayinya. Di malam hari, sebelum tidur, dia suka membaca buku bersama orang tuanya dan mendengarkan cerita tentang putri. Dia memiliki banyak keinginan dan impian; salah satunya, bertemu Minnie Mouse, menjadi kenyataan beberapa tahun yang lalu ketika dia pergi ke EuroDisney (rumah Minnie di Eropa) dan bertemu dengannya di sebuah resepsi pribadi tempat mereka bermain, berbicara, menari, dan berpelukan. Karena Alexandra adalah satu-satunya kasus di Spanyol, dan tidak ada yayasan khusus untuk Progeria di negara tersebut, keluarga Alexandra memutuskan untuk membuat yayasan mereka sendiri \u2013 \u201c<a href=\"https:\/\/www.asociacionprogeria.com\">Asosiasi Progeria Alexandra Peraut<\/a>\u201d \u2013 sebagai cara untuk meningkatkan kesadaran dan dana untuk penelitian Progeria. Orang tua Alexandra ditantang untuk menyelesaikan Triatlon Tantangan Madrid (estafet penuh) untuk meningkatkan kesadaran terhadap Progeria dan <a href=\"https:\/\/www.asociacionprogeria.com\">asosiasi<\/a> dan untuk mengumpulkan dana penelitian. Lihatlah <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Alexandra-movie-clip.mp4\">video ini<\/a> dari keluarga yang melewati garis finis, dan melihat mereka <a href=\"https:\/\/www.instagram.com\/asociacionprogeria\/\">Instagram<\/a> Dan <a href=\"https:\/\/www.facebook.com\/AsociacionProgeriaAlexandraPeraut\/\">Indonesia<\/a> untuk informasi lebih lanjut!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dBrennen\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Brennen-in-field.jpg\u201d label_admin=\u201dBrennen\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Brennen adalah seorang anak laki-laki berusia 15 tahun dari New York. Dia sangat aktif dan mencintai anjingnya serta adik laki-lakinya, Owen. Keluarga dan teman-teman Brennen memulai TEAM BRENNEN untuk membantu mengumpulkan dana dan meningkatkan kesadaran tentang Progeria, dan kota kecil mereka di bagian utara New York telah mendukung keluarga tersebut. Pada bulan Juli 2014, Brennen melahirkan anak pertamanya <a href=\"https:\/\/www.progeriaresearch.org\/id\/clinical-trials\/\">Uji Klinis Progeria<\/a> kunjungan di Boston. Ibunya memposting ke Facebook betapa bangganya dia atas cara Brennen menangani semua pengujian! Ikuti terus anak kecil yang menyenangkan ini dan timnya yang hebat di\u00a0<a href=\"https:\/\/www.facebook.com\/TeamBrennen\" target=\"_blank\" rel=\"noopener noreferrer\">Halaman Facebook Tim Brennen<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dEnzo\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Enzomtk.png\u201d label_admin=\u201dEnzo\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Enzo adalah anak laki-laki berusia 13 tahun yang menggemaskan dari Australia dengan senyum yang indah dan menular. Enzo suka membangun dengan Lego dan sangat tertarik mempelajari semua tentang planet dan luar angkasa. Dia adalah siswa penuh waktu, di mana matematika, sains, dan seni adalah mata pelajaran favoritnya. Dia menikmati waktunya di sekolah dengan teman-temannya, di mana dia adalah anak yang populer! Enzo suka olahraga, tetapi dia tidak cukup kuat untuk bermain dengan teman-temannya. Sebaliknya, dia menikmati pelajaran berenang dan menari mingguan. Dia berpartisipasi setiap tahun di Glenelg Christmas Pageant dan konser akhir tahun dengan Dancers by Donna. Dia suka berada di atas panggung! Kecintaannya pada musik meningkat setiap tahun, dan dia berencana untuk mengambil pelajaran gitar segera. Selain itu, Enzo suka berlari. Dia berpartisipasi setiap tahun di City-to-Bay Fun Run di Adelaide dalam kelompok jalan kaki 6 km. Menyaksikannya melewati garis finis setiap tahun adalah hal yang tak ternilai harganya. Enzo telah membangun komunitas \u2013 &#039;Tim Enzo&#039; menyelenggarakan banyak kegiatan penggalangan dana untuk mendukung Enzo dalam perjalanannya melawan Progeria.<\/p>\n<p>Enzo adalah salah satu anak termuda yang mendaftar dalam Uji Klinis PRF, pada tahun 2015. Kunjungan pertamanya ke Boston adalah pada bulan April 2015 saat berusia 3 tahun. Berikutnya, ia datang pada bulan September 2017, dan terakhir pada bulan September 2019. Enzo telah mendaftar dalam uji satu obat untuk terus mengonsumsi lonafarnib. Sebagai orang tua, Catherina dan Percy telah belajar untuk hidup dengan rasa takut bahwa apa pun dapat terjadi kapan saja. Di sisi lain, kehadiran PRF dalam hidup mereka telah memberi mereka harapan bahwa alih-alih menikmati Enzo hanya selama 14 atau 15 tahun, kini mereka dapat dengan yakin percaya bahwa mereka akan melihatnya menyelesaikan sekolah menengah, mengendarai mobil, dan melanjutkan studinya. Mereka berharap bahwa obatnya akan ditemukan di tahun-tahun mendatang!<\/p>\n<p>Lihat Enzo bergerak dan temui keluarganya di sini <a href=\"https:\/\/m.youtube.com\/watch?v=QEUumIaxM9M\" target=\"_blank\" rel=\"noopener noreferrer\">video spesial<\/a>, dan tetap berhubungan dengan mereka di <a href=\"https:\/\/www.facebook.com\/TeamEnzoProgeria\/\">Indonesia<\/a>Anda juga dapat mendukung Tim Enzo di <a href=\"https:\/\/www.teamenzoprogeria.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">halaman penggalangan dana<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dKaylee\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Kayleebeach2024.png\u201d label_admin=\u201dKaylee yang Manis\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Kaylee berusia 21 tahun dan berasal dari Ohio. Saat tidak belajar untuk menjadi asisten hukum, ia senang menghabiskan waktu dengan teman-temannya, mengemudikan mobil van, dan bepergian. Perjalanan favoritnya sejauh ini adalah ke Savannah, GA, dan Phoenix, AZ. Kaylee adalah seorang influencer online, selebritas lokal, dan gadis yang sangat sibuk. Ia diundang untuk berbicara di Total Package Girl Leadership Summit pada bulan Oktober 2019. Ikuti terus perkembangan Kaylee dengan bergabung dengannya <a href=\"https:\/\/www.facebook.com\/groups\/111892979356\/\" target=\"_blank\" rel=\"noopener noreferrer\">Grup Facebook!<\/a><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dLindsay\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/LindsayR2024.jpeg\u201d label_admin=\u201dLindsay\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Lindsay adalah seorang wanita berusia 20 tahun yang rendah hati dan periang dari Michigan, yang tampil bersama Hayley dan Kaylee di Barbara Walters 20\/20 Special tahun 2010 <a href=\"https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id=14185425\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id%3D14185425&amp;source=gmail&amp;ust=1599057849436000&amp;usg=AFQjCNFL6t163_Ywh2h6I2JJtLANUELn-Q\">&#039;7 Menuju 70&#039;<\/a>. Sekarang, dia sangat sukses di Albion College!! Pada bulan Mei 2024, dia menerima pengakuan sebagai salah satu peraih IPK tertinggi di antara Kelas 2026! Lindsay senang menghabiskan waktu bersama teman-temannya saat dia tidak belajar, mendengarkan musik, membaca, menulis, atau menggambar.<\/p>\n<p>Sebagai mahasiswa baru di Konferensi Hak Asasi Manusia Internasional Challenging Borders di Albion College pada bulan April 2023, ia memaparkan berbagai kebijakan di daerah perlindungan di AS, berinteraksi dengan orang-orang dari 9 negara dan 18 universitas. Itu benar-benar pengalaman budaya!!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dMichiel &amp; Amber\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MichielAmberMTK.png\u201d label_admin=\u201dMichiel &amp; Amber\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Temui Michiel, 26 tahun, yang gemar bermain papan seluncur salju dan balap gokart, bermain gim komputer, nongkrong bersama teman-temannya, dan &quot;Teori Big Bang&quot;. Adik perempuannya yang berusia 18 tahun, Amber, gemar bermain kuda dengan Michiel, dan gemar senam, menari, warna hijau, dan ponselnya. Baca tentang saudara kandung yang sangat dekat dari Belgia ini di <a href=\"https:\/\/www.progeria.be\/?lang=en\">situs multibahasa<\/a>\u00a0diciptakan dengan cinta oleh orang tua mereka. Pelajari melalui buku harian terperinci tentang pengalaman mereka hidup dengan Progeria, dan kehidupan anak laki-laki dan perempuan yang luar biasa ini yang membawa begitu banyak kegembiraan bagi semua orang yang mengenal mereka. Anda juga dapat tetap berhubungan dengan mereka di\u00a0<a href=\"https:\/\/www.facebook.com\/pages\/Ik-ben-michiel\/204907719690404\">Halaman Facebook Michiel <\/a>atau aktif <a href=\"https:\/\/www.instagram.com\/amber.vandeweert\/\">Halaman Instagram Amber<\/a>.<\/p>\n<p>Kami belajar banyak tentang Michiel dan Amber melalui permainan pertama kami \u201c<a href=\"https:\/\/www.youtube.com\/watch?v=WerLe5ApRwc\" target=\"_blank\" rel=\"noopener noreferrer\">Pertarungan Saudara Kandung<\/a>\u201d. Mereka tidak sepakat dalam banyak hal, tetapi jelas bahwa Amber menjaga kamar tidurnya tetap rapi dan kedua saudara kandung itu bermimpi untuk bepergian. Keluarga itu memilih Cambridgeside Galleria Mall sebagai lokasi pemotretan, yang masuk akal setelah mendengar bahwa salah satu kegiatan favorit Amber adalah berbelanja! Untuk melihat lebih dekat kehidupan Michiel dan Amber, lihat <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/09\/2019-Newletter-For-Web.pdf\">Buletin PRF 2019<\/a>, yang menampilkan wawancara singkat dengan duo saudara kandung tersebut.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dNathan &amp; Bennett\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/NathanBennettMTK.png\u201d label_admin=\u201dNathan &amp; Bennett\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Nathan dan Bennett adalah saudara laki-laki dengan Progeria yang tinggal di luar Philadelphia, PA bersama orang tua mereka, kakak perempuan Libby, dan anjing Ruby. Mereka berdua memiliki bentuk Progeria langka yang disebut Mandibuloacral Dysplasia (MAD) dan memiliki kondisi medis yang mirip dengan anak-anak dengan Progeria klasik. Nathan berusia 19 tahun dan Bennett berusia 15 tahun. Nathan sangat berhati-hati, bertanggung jawab, dan berpikiran akademis. Dia bermain biola, terompet, dan menyukai apa pun yang berhubungan dengan sains. Bennett lebih &#039;riang&#039; dan berhasil melakukan banyak hal karena senyumnya yang menawan dan kepribadiannya yang konyol. Dia menyukai apa pun yang berhubungan dengan olahraga dan bermain sepak bola selama berjam-jam di luar, terlepas dari cuacanya! Keduanya terobsesi dengan Star Wars, Minecraft, dan tentu saja, perangkat elektronik mereka! Meskipun usia dan kepribadian mereka berbeda, keduanya adalah sahabat karib! Lihat persaudaraan\/persahabatan mereka yang indah dan temui keluarga mereka dalam <a href=\"https:\/\/www.facebook.com\/specialbooksbyspecialkids\/videos\/1140314192737226\/\">wawancara yang mengharukan<\/a>\u00a0oleh\u00a0<em>Buku Khusus untuk Anak-anak Berkebutuhan Khusus<\/em>Untuk informasi lebih lanjut tentang duo dinamis ini, silakan kunjungi\u00a0<a href=\"https:\/\/www.facebook.com\/pg\/nathanandbennett\/about\/?ref=page_internal\">Halaman Facebook<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dZein\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Zein.png\u201d label_admin=\u201dZein\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Zein adalah satu-satunya anak di Mesir yang diidentifikasi namanya dan diuji secara genetik untuk Progeria. Ia berusia 7 tahun dan merupakan bagian dari uji coba monoterapi PRF. Pada bulan September 2019, perjalanannya ke Boston untuk uji coba tersebut merupakan kali pertama ia meninggalkan Mesir! Zein senang menghabiskan waktu bersama keluarganya, membaca buku dengan kakak laki-lakinya, Adam, serta bernyanyi dan menari. Semua orang menyukai Zein saat bertemu dengannya, karena ia sangat manis dan ramah. Ia membawa kebahagiaan bagi seluruh keluarga dan teman-temannya. Ibunya, Dina, mengatakan bahwa ia \u201csangat bangga memiliki anak seperti dia.\u201d Ketahui lebih banyak tentangnya <a href=\"https:\/\/www.youtube.com\/watch?v=fLySH7FqPq4\">Di Sini<\/a>.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner struktur_kolom=\u201dundefined\u201d bantalan_khusus_terakhir_diedit=\u201dpada|ponsel\u201d _builder_version=\u201d4.27.2\u2033 bantalan_khusus=\u201d40px|35px|39.0156px|0px|false|false\u201d bantalan_khusus_tablet=\u201d|35px||35px||true\u201d bantalan_khusus_ponsel=\u201d\u201d lebar_batas_atas=\u201d10px\u201d warna_batas_atas=\u201d#8fd2ed\u201d info_warna_global=\u201d{}\u201d][et_pb_column_inner jenis=\u201dundefined\u201d jenis_kolom_khusus_yang_disimpan=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|||\u201d info_warna_global=\u201d{}\u201d bantalan_khusus__hover=\u201d|||\u201d][et_pb_text _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d3px||5px||false|false\u201d bantalan_khusus=\u201d3px||10px||false|false\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<h3>Dalam Kenangan Penuh Cinta\u2026<\/h3>\n<p>Anda mungkin pernah membaca tentang anak-anak dan remaja istimewa ini \u2013 yang masing-masing telah memberikan dampak yang sangat besar dengan cara yang sangat unik\u2026<\/p>\n<p>[\/et_pb_text][et_pb_team_member nama=\u201dAdalia Rose\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Adalia-with-butterflyMTK.jpg\u201d label_admin=\u201dAdalia\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Adalia, seorang remaja dari Texas dengan <a href=\"https:\/\/www.youtube.com\/@AdaliaRoseBudd\">kepribadian seukuran Texas<\/a> juga meninggal pada bulan Januari 2022 di usia 15 tahun. Dia suka bernyanyi, menari, dan bermain dandanan. Dia dikenal luas karena video-videonya yang menyenangkan dan hubungan istimewanya dengan ibunya, Natalia \u2013 <a href=\"https:\/\/www.facebook.com\/AdaliaRose\">12 juta pengikut Facebook<\/a> adalah buktinya!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dBeandri\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/08\/Beandi2024.png\u201d label_admin=\u201dBeandri\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.0\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p><span>Beandri berasal dari Afrika Selatan dan akan berusia 19 tahun pada bulan November 2024. Dia adalah salah satu dari empat bersaudara, dengan tiga kakak laki-laki. Beandri menyukai musik Afrikaans dan ingin membuat orang lebih peduli tentang Progeria dengan melakukan siaran langsung di TikTok. Dia dikenal sebagai BB di TikTok. Dia memperoleh sertifikat dalam Penitipan Anak dan Psikologi Anak dan baru-baru ini juga menyelesaikan studinya sebagai Pelatih Kehidupan. Dia mencintai anjingnya dan Angel, monyet marmosetnya. Dia sangat positif, meskipun dia menjalani banyak operasi. Keluarganya memiliki halaman Facebook untuknya,<\/span>\u201c<a href=\"https:\/\/www.facebook.com\/groups\/beandri\/\" target=\"_blank\" rel=\"noopener noreferrer\">Beandri, Inspirasi Kami<\/a>.\u201d <span> Dia merupakan inspirasi besar bagi kita semua dan membuat kita tetap positif dengan pandangannya terhadap hidup.<\/span><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dCameron\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Cam-with-art-project.jpg\u201d label_admin=\u201dCameron\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Cam adalah penggemar berat olahraga. Jika tidak berolahraga, ia senang menonton tim olahraga favoritnya; Pittsburgh Penguins dan Steelers. Makanan favoritnya termasuk es krim cokelat dan pasta. Warna favoritnya adalah biru dan ia menyukai matematika dan permainan video. Cam berusia 16 tahun saat meninggal pada tahun 2023.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dCarly\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Carly_Heart_2016.jpg\u201d label_admin=\u201dCarly\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Carly-Q, begitu ia dipanggil dengan penuh kasih sayang oleh teman-teman dan keluarganya, adalah sosok yang menggemaskan dan penuh energi! Carly menikmati proyek-proyek DIY, membuat slime, dan merawat banyak boneka bayinya. Ia juga senang menonton dan berkreasi <a href=\"https:\/\/www.youtube.com\/user\/TeamCarlyQ\">video di Youtube<\/a>.<\/p>\n<p>Pada tahun 2012, Carly Cares, sebuah organisasi nirlaba 501(c)3 didirikan untuk mendukung keluarga dan peneliti progeria.\u00a0<\/p>\n<p>Carly gemar menari, sekolah, dan terutama matematika. Pada bulan Juli 2013, Carly bergabung dengan Uji Coba Obat Progeria, datang ke Boston untuk mendaftar bersama temannya Zoey dan pada bulan April 2016, mereka menjadi yang pertama mendaftar dalam uji coba baru yang melibatkan 2 obat. \u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=reh9GvH9Jis\" target=\"_blank\" rel=\"noopener noreferrer\">Klik disini<\/a> untuk menonton video pendeknya bersama Zoey di Boston. Lihat Ibu Carly-Q di <a href=\"https:\/\/www.facebook.com\/CarlyQsMom\" target=\"_blank\" rel=\"noopener noreferrer\">Indonesia<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dClaudia\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/claudia-with-frame.jpg\u201d label_admin=\u201dClaudia\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Claudia dari Portugal berusia 23 tahun saat meninggal pada bulan November 2021. Warna favoritnya adalah biru, mata pelajaran favoritnya adalah Bahasa Asing, dan makanan favoritnya adalah kentang panggang \u201cPunched\u201d dengan ikan kod asin (dalam bahasa Portugis, \u201cBatata \u00e1 murro com Bacalhau\u201d). Dia juga menyukai musik, menari, dan jalan-jalan bersama teman-temannya. Anda dapat melihat halaman Facebook-nya <a href=\"https:\/\/www.facebook.com\/claudia_amaral98-115697513133971\/\">Di Sini.<\/a><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dHayley\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/hayley-blue-MTK.jpg\u201d label_admin=\u201dHayley\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Hayley, seorang remaja dari Inggris dengan Progeria yang merebut hati banyak orang, meninggal pada bulan April 2015 pada usia 17 tahun. Hayley memenangkan penghargaan bergengsi <em>Penghargaan Anak-anak Pemberani<\/em> dan muncul dalam beberapa film dokumenter dan cerita tentang Progeria. Anda dapat mengenal Hayley dengan membaca buku-bukunya,\u00a0<a href=\"https:\/\/www.amazon.com\/Old-Before-My-Time-Progeria-ebook\/dp\/B0873943LH\/ref=sr_1_1?dchild=1&amp;keywords=old+before+my+time&amp;qid=1596217460&amp;sr=8-1\" target=\"_blank\" rel=\"noopener noreferrer\">Tua Sebelum Waktuku<\/a>, Dan\u00a0<a href=\"https:\/\/www.amazon.com\/Young-Heart-likes-teenager-Progeria-ebook\/dp\/B084FXDTH4\/ref=sr_1_1?dchild=1&amp;keywords=young+at+heart+hayley+okines&amp;qid=1596217512&amp;s=digital-text&amp;sr=1-1\" target=\"_blank\" rel=\"noopener noreferrer\">Muda di Hati<\/a>, tentang hidup dengan Progeria. Dalam kata-katanya, \u201chidup saya dengan progeria penuh dengan kebahagiaan dan kenangan indah. Jauh di lubuk hati saya, saya tidak berbeda dengan orang lain. Kita semua manusia.\u201d Sungguh sebuah inspirasi!\u00a0<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dJomar\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Jomar-untuk-situs-web-1.png\u201d label_admin=\u201dJomar\u201d kelas_modul=\u201dprf-orang-modul\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Jomar penuh dengan kehidupan! Ia suka menari dan bernyanyi. Lagu favoritnya adalah &quot;Vamos a la Playa&quot;! Jomar mencintai binatang dan mengunjungi kebun binatang dan akuarium. Acara favoritnya termasuk Paw Patrol dan Spiderman. Jomar berusia 13 tahun ketika ia meninggal pada tahun 2023.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dJosiah\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/josiah-on-first-baseMTK.jpg\u201d label_admin=\u201dJosiah\u201d kelas_modul=\u201dprf-person-module\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Josiah, seorang tokoh yang sangat menarik perhatian penggemar olahraga di mana-mana karena kecintaannya pada bisbol, meninggal dunia pada tanggal 24 Desember 2018 di usia 14 tahun. Josiah tampil pada tahun 2010 dan 2017 di ESPN E:60, dan telah menginspirasi banyak orang dengan keberaniannya, termasuk pemain favoritnya, Ryan Howard dari Philadelphia Phillies. Dipilih oleh ABC sebagai\u00a0<a href=\"https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id=14029162\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id%3D14029162&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNGHOV9V6FQb7HKDHNtUe4TjxSjTJw\">\u201cTokoh Minggu Ini\u201d\u00a0<\/a>Pada tahun 2011, Josiah memengaruhi orang lain karena, seperti yang dikatakan ibunya Jennifer, \u201cDia tidak membiarkan kondisinya menghentikannya. Dia ditempatkan di sini untuk menyentuh kehidupan orang lain.\u201d Josiah bertugas sebagai\u00a0<a href=\"https:\/\/www.centredaily.com\/sports\/article171690452.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.centredaily.com\/sports\/article171690452.html&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNFzpw4D1uPJ4i0w-8uTzr9OhNTezw\">Pelatih Kehormatan untuk State College Spikes<\/a>\u00a0Tim bisbol (A \u2013 Cardinals), meraih Penghargaan Mitauer \u201cGood Guy\u201d tahun 2015 atas kontribusinya pada musim kejuaraan mereka dan karena menjadi manusia yang murah hati, berani, dan bersemangat di luar lapangan.\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=-ZQ1Yb7QdDo\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3D-ZQ1Yb7QdDo&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNFUQ72_AlP4m56j9ykppl-ujIC3FQ\">Video yang mengharukan ini<\/a>\u00a0menunjukkan seberapa dekatnya tim dengan pelatih bangku cadangan yang inspiratif selama musim 2014.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dMateo\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MateoMTK.png\u201d label_admin=\u201dMateo\u201d kelas_modul=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 margin_khusus=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Mateo berusia 22 tahun dan berasal dari kota besar di Argentina. Ia mulai datang ke Boston untuk uji klinis Progeria pertama, sejak tahun 2007! Ia berencana untuk mengejar karier di bidang teknik komputer dan menyukai teknologi; ia selalu menggunakan ponselnya, menjelajahi web, dan memainkan game favoritnya, \u201cFree Fire.\u201d Ia juga suka bermain poker dan catur.<\/p>\n<p>Ia tidak suka melewatkan akhir pekan bersama sepupu kesayangannya, Enzo dan Agustin (kembar), dan teman-teman mereka. Mateo sangat dicintai oleh semua temannya, dan oleh banyak orang dalam jaringannya yang mendukungnya dalam perjalanannya.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dNihal\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nihal-dengan-Lamborghini-Feb-2015.jpg\u201d label_admin=\u201dNihal\u201d kelas_modul=\u201dprf-orang-modul\u201d versi_pembuat=\u201d4.24.3\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p>Nihal dari Mumbai, India, meninggal pada tahun 2016 di usia 15 tahun. Nihal adalah penggemar berat sains yang gemar melukis. Anda dapat melihat beberapa karya seninya yang luar biasa di halaman Facebook-nya,\u00a0<a href=\"https:\/\/www.facebook.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">TIM NIHAL<\/a>\u00a0dan pada saat nya\u00a0<a href=\"https:\/\/twitter.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>, keduanya masih aktif oleh Ayahnya, Srinivas. Salah satu impian terbesar Nihal adalah mengendarai Lamborghini-mimpi yang menjadi kenyataan pada awal tahun 2015 di Lamborghini Mumbai, yang mengejutkan Nihal di ulang tahunnya yang ke-14. Nihal adalah tokoh penting dalam kampanye tersebut\u00a0<a href=\"https:\/\/twitter.com\/hashtag\/Finding60inIndia?src=hash\" target=\"_blank\" rel=\"noopener noreferrer\">#Finding60diIndia<\/a>, bagian dari Kampanye Find the Other 150 PRF yang bermitra dengan MediaMedic Communications India. Diperkirakan ada 60 anak di India yang ingin kami identifikasi dan hubungi agar mereka bisa mendapatkan bantuan khusus yang mereka butuhkan, termasuk partisipasi dalam uji klinis obat yang didanai PRF. Tonton ini\u00a0<a href=\"https:\/\/m.youtube.com\/watch?v=JxWo4k5iJpU&amp;feature=youtu.be\" target=\"_blank\" rel=\"noopener noreferrer\">video yang menampilkan Nihal<\/a>\u00a0untuk informasi lebih lanjut.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nama=\u201dZach\u201d url_gambar=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/09\/Zach-usia-17-AS.jpg\u201d label_admin=\u201dZach\u201d kelas_modul=\u201dprf-orang-modul\u201d versi_pembuat=\u201d4.27.0\u2033 margin_khusus=\u201d||45px\u201d indeks_z_tablet=\u201d500\u2033 posisi_anggota_css_khusus=\u201dwarna: #00b2e2;\u201d info_warna_global=\u201d{}\u201d]<\/p>\n<p style=\"font-weight: 400;\"><span data-markjs=\"true\">Zach<\/span> berusia 17 tahun saat meninggal pada bulan September 2024. Ia tinggal di Lexington, Kentucky, menyukai warna kuning dan kecanduan video Minecraft. Ia juga suka bepergian, bermain game, dan mendengarkan musik rock klasik. <span data-markjs=\"true\">Zach<\/span> unggul dalam matematika, menyukai pizza, roti keju, burger keju, dan chicken finger.<\/p>\n<p style=\"font-weight: 400;\"><span data-markjs=\"true\">Zach<\/span> dan orang tuanya menjadi tamu (dengan Carly Q) di The Katie Show pada bulan Juni 2014. Katie Couric adalah pendukung setia anak-anak dengan Progeria. Katie membuat <span data-markjs=\"true\">Zach<\/span>tahun dengan memberinya hadiah paling menakjubkan yang pernah ada\u2026 tiket untuk band rock favoritnya, Queen! <span data-markjs=\"true\">Zach<\/span>Orang tua &#039;s menyelenggarakan penggalangan dana Progeria setiap tahun (<span data-markjs=\"true\">Zach<\/span> Attack Ride for Progeria). Energinya yang menular, selera humornya yang cemerlang, dan senyumnya akan tetap ada selamanya.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; module_class=&#8221;footer&#8221; _builder_version=&#8221;4.21.0&#8243; background_color=&#8221;#29327a&#8221; custom_margin=&#8221;-2px|||||&#8221; custom_padding=&#8221;0|0px|0|0px|false|false&#8221; z_index_tablet=&#8221;500&#8243; border_width_top=&#8221;12px&#8221; border_color_top=&#8221;#00b2e2&#8243; global_module=&#8221;133&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_4,1_4,1_2&#8243; make_equal=&#8221;on&#8221; module_class=&#8221; et_pb_row_fullwidth&#8221; _builder_version=&#8221;4.16&#8243; width=&#8221;89%&#8221; width_tablet=&#8221;80%&#8221; width_phone=&#8221;&#8221; width_last_edited=&#8221;on|desktop&#8221; max_width=&#8221;89%&#8221; max_width_tablet=&#8221;80%&#8221; max_width_phone=&#8221;&#8221; max_width_last_edited=&#8221;on|desktop&#8221; z_index_tablet=&#8221;500&#8243; make_fullwidth=&#8221;on&#8221; width_unit=&#8221;off&#8221; custom_width_percent=&#8221;100%&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_cta button_url=&#8221;https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz&#8221; button_text=&#8221;Sign Up Now&#8221; admin_label=&#8221;Sign Up for Updates&#8221; module_class=&#8221;sign-btn&#8221; _builder_version=&#8221;4.27.4&#8243; header_font_size=&#8221;25px&#8221; background_color=&#8221;#29327a&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;left&#8221; animation_intensity_slide=&#8221;25%&#8221; link_option_url=&#8221;https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz&#8221; header_font_size_tablet=&#8221;&#8221; header_font_size_phone=&#8221;30px&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; z_index_tablet=&#8221;500&#8243; border_radii=&#8221;on|25px|25px|25px|25px&#8221; global_colors_info=&#8221;{}&#8221; button_bg_color__hover_enabled=&#8221;on&#8221; button_bg_color__hover=&#8221;#8fd2ed&#8221; button_border_color__hover_enabled=&#8221;on&#8221;]<\/p>\n<h2>Mendaftar<\/h2>\n<h2>untuk Kami<\/h2>\n<h2>Pembaruan!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dDonasi Sekarang\u201d admin_label=\u201dBersama-sama, kita akan menemukan obatnya!\u201d modul_kelas=\u201dtanda-btn\u201d _builder_version=\u201d4.16\u2033 ukuran_font_header=\u201d25px\u201d warna_latar belakang=\u201d#29327a\u201d gaya_animasi=\u201dslide\u201d arah_animasi=\u201dkiri\u201d intensitas_animasi_slide=\u201d25%\u201d ukuran_font_header_tablet=\u201d\u201d ukuran_font_header_phone=\u201d30px\u201d ukuran_font_header_last_edited=\u201dpada|desktop\u201d ukuran_font_body_tablet=\u201d\u201d ukuran_font_body_phone=\u201d\u201d ukuran_font_body_last_edited=\u201dpada|desktop\u201d z_index_tablet=\u201d500\u2033 radius_batas=\u201dpada|25px|25px|25px|25px\u201d info_warna_global=\u201d{}\u201d warna_latar_belakang_tombol__hover_enabled=\u201dpada\u201d tombol_warna_latar_belakang_hover=\u201d#8fd2ed\u201d tombol_warna_batas_belakang_hover_diaktifkan=\u201daktif\u201d]<\/p>\n<h2>Bersama-sama, kita<\/h2>\n<h2><em>AKAN<\/em><\/h2>\n<h2>temukan obatnya!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/2026-footer-image-copy.png&#8221; title_text=&#8221;2026 footer image copy&#8221; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;35px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Banyak keluarga telah membuat situs web dan media sosial yang indah yang dikhususkan untuk anak-anak mereka. Datanglah ke sini untuk bertemu dengan anak-anak sehingga kisah mereka dapat menginspirasi Anda untuk mendukung PRF.\t\t\t\t\t\t<\/p>","protected":false},"author":1,"featured_media":5856,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<p>[vc_row][vc_column][vc_custom_heading text=\"Meet The Kids\" font_container=\"tag:h1|text_align:center\" google_fonts=\"font_family:Open%20Sans%3A300%2C300italic%2Cregular%2Citalic%2C600%2C600italic%2C700%2C700italic%2C800%2C800italic|font_style:400%20regular%3A400%3Anormal\"][\/vc_column][\/vc_row][vc_row css=\".vc_custom_1477073686504{margin-bottom: 2% !important;}\"][vc_column width=\"1\/2\"][vc_column_text]Many families have created beautiful web and social media sites\u00a0devoted to their children, giving you insight into their daily lives, and their hopes and dreams for a cure. We hope their stories inspire you to support PRF, so those dreams can come true.<\/p><p style=\"font-weight: 400;\">As of March 31, 2019, here is where the 157 known children* with Progeria live:<\/p><p style=\"text-align: center;\"><img class=\"aligncenter size-full wp-image-4632\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Map-33119.jpg\" alt=\"\" width=\"600\" height=\"352\" \/><\/p><p>[\/vc_column_text][vc_column_text]<strong>*<\/strong> This figure includes 123 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 34 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.[\/vc_column_text][\/vc_column][vc_column width=\"1\/2\"][vc_column_text]Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!<br \/>[\/vc_column_text][vc_column_text css=\".vc_custom_1481585776797{margin-top: -1px !important;}\"]<iframe src=\"https:\/\/www.youtube.com\/embed\/aOB3ltOeK9I\" width=\"560\" height=\"335\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe>[\/vc_column_text][vc_column_text]<i>All descriptions were updated July 2015, and most photos were taken in 2013-2015.\u00a0<\/i>First, updates on Sam, Megan, Sammy and Zoey, the children featured in the HBO Documentary Life According to Sam (they were filmed from 2010-2012):[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\" css=\".vc_custom_1480099322375{margin-right: 5% !important;margin-bottom: 60px !important;}\"][vc_column_text css=\".vc_custom_1480513390549{background-color: #ffffff !important;}\"]<\/p><h1 style=\"text-align: center;\">Sam<\/h1><p><a href=\"https:\/\/www.progeriaresearch.org\/sam-berns-102396-0110141.html\"><img class=\"size-full wp-image-347 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sam_Brochure-2010MTK.jpg\" alt=\"sam_brochure-2010mtk\" width=\"150\" height=\"199\" \/><\/a>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" el_class=\"mtkgray\" css=\".vc_custom_1491161931334{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Sam passed away on January 10, 2014.\u00a0He was 17 years old. The film shows Sam at ages 13 \u2013 15, and we are so grateful that this award-winning documentary will allow the world to know this extraordinary person and the legacy of love, hope and inspiration he gifted to the world. Sam enjoyed many things, including music, comic books, and watching his beloved Boston sports teams play. He attained the highest academic honors, was a percussion section leader in his high school band, and achieved the rank of Eagle Scout in the Boy Scouts of America.<\/p><p>Sam spoke publicly starting at the age of 4 years, shortly after his parents founded The Progeria Research Foundation, including at two\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/tedx-talks\/\" target=\"_blank\" rel=\"noopener noreferrer\">TEDx conferences<\/a>. As of December 2018, his <a href=\"https:\/\/www.progeriaresearch.org\/tedx.html\" target=\"_blank\" rel=\"noopener noreferrer\">October 2013 talk on his philosophy for a happy life<\/a> has been viewed by just shy of 60 million people, and daily tweets about how his talk has inspired people continue. Sam was interviewed on national television and radio programs, including ABC Primetime and NPR, impressing his audiences with his articulate, witty and intelligent demeanor. Through Life According to Sam and his TedX talk, he continues to inspire all of us at PRF, as well as millions around the world.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Meghan Waldron<\/h1><h1 style=\"text-align: center;\"><img class=\"size-full wp-image-4500 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2018\/12\/Meghan-W..png\" alt=\"\" width=\"150\" height=\"150\" \/><\/h1><p>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161942567{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text el_class=\"mtkgray\"]<strong>PRF\u2019s Youth Ambassador<\/strong><\/p><p>Meghan is an accomplished cellist and violinist, high school cross country and track team athlete and published poet and book author. She is a senior in high school and lives with her family in Massachusetts.\u00a0 Meghan now serves as spokesperson for The Progeria Research Foundation, from the perspective of a youth with Progeria.\u00a0In this role Meghan focuses on engaging youth around such events as Hats ON for Progeria, sharing her ideas on how to impact people through social media, and participating in PRF media outreach. Order a copy of her book here: <a href=\"https:\/\/progeria-research-foundation-shop.myshopify.com\/products\/running-on-the-wind-a-book-by-meghan-waldron-prfs-youth-ambassador\">https:\/\/progeria-research-foundation-shop.myshopify.com\/products\/running-on-the-wind-a-book-by-meghan-waldron-prfs-youth-ambassador<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Megan<\/h1><p><img class=\"size-full wp-image-349 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Megan-with-blonde-wig.jpg\" alt=\"megan-with-blonde-wig\" width=\"150\" height=\"150\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161942567{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text el_class=\"mtkgray\"]During the filming of <em>Life According to Sam<\/em> she was 10 years old. Now Megan is eighteen and in high school. Megan loves riding horses and enjoys crafting jewelry for all her friends.<\/p><p>Megan was the first child to take the lonafarnib drug in June 2007 \u2013 it was an historic moment! She is currently enrolled in the <a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#triple\">Lonafarnib Trial<\/a> Extension\/Expansion. When schedules allow she comes to Boston for her trial treatments with her friend Meghan Waldron. The two girls have been together in Boston for most of their trial visits. Megan and her family want you to know that they have complete faith and trust in all of the researchers and doctors and of course PRF: <em>\"But those who hope in the Lord will receive their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.\" Isaiah 40:31<\/em>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Sammy<\/h1><p><img class=\"wp-image-351 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sammy-Basso-2015.jpg\" width=\"150\" height=\"210\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161949685{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Sammy is 23 years old and is from Italy. \u00a0His favorite activities include acting, reading, painting, and hanging out with his friends. In 2014 Sammy was featured in an Italian National Geographic Series,\u00a0<a href=\"https:\/\/natgeotv.nationalgeographic.it\/it\/il-viaggio-di-sammy\/a-proposito-di\"><em>Il Viaggio Di Sammy<\/em><\/a>, which chronicled his dream trip: travelling on Route 66 in the United States from Chicago to Los Angeles with his parents, Laura and Amerigo, and friend Richard. Sammy\u2019s parents founded the\u00a0<a href=\"https:\/\/www.facebook.com\/groups\/40213564765\/#_=_\"><strong>Associazione Italiana Progeria Sammy Basso<\/strong><\/a>\u00a0to raise awareness, fund research and provide support services to the families. Sammy is a spokesperson at foundation-related meetings, conferences and events. People in Italy can often see Sammy on TV or hear him on the radio on some of the most popular stations, where he also speaks of Progeria and the foundation\u2019s activities.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Adalia<\/h1><p><img class=\"wp-image-354 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Adalia-with-butterflyMTK.jpg\" width=\"150\" height=\"203\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161957194{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Adalia \u2013 she\u2019s from Texas and has a personality the size of Texas, too! She loves to\u00a0sing, dance and play dress up. This 12 year-old sweetheart is widely known for her fun videos and special relationship with her mom, Natalia \u2013 her 14 million Facebook followers are proof of that![\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Brennen<\/h1><p><img class=\"wp-image-356 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Brennen-in-field.jpg\" width=\"150\" height=\"247\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161964129{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Brennen is a ten year old boy from New York. He is very active and loves his dog and his little brother, Owen. Brennen\u2019s family and friends started TEAM BRENNEN to help raise funds and awareness for Progeria, and their small town in upstate NY has rallied around the family. In July 2014,Brennen had his first <a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html\">Progeria Clinical Trial<\/a> visit in Boston. His mom posted to Facebook how proud she was for the way Brennen handled all the testing! Keep up with this fun little boy and his great teamon the <a href=\"https:\/\/www.facebook.com\/TeamBrennen\" target=\"_blank\" rel=\"noopener noreferrer\">Team Brennen Facebook page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Zoey<\/h1><p><img class=\"alignnone size-full wp-image-1589 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/zoey.jpg\" alt=\"\" width=\"139\" height=\"184\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161970346{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]During filming of Life According to Sam, she was about a year old and now she is nine! She loves school and has lots of friends!\u00a0 Zoey loves to draw, write, be silly, be with her best friends, help her mom cook, and she especially loves gymnastics class!<\/p><p>Zoey also adores music, singing, and dancing.\u201d She has 2 older brothers, Aidan and Gavin. They behave like typical siblings \u2013 they play together a lot but sometimes argue for no reason.<\/p><p>In July 2013 Zoey began taking lonafarnib as part of the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#triple\">Trial Expansion<\/a>, and in April 2016, she and her friend Carly were the first to enroll in the new, \u00a0<a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#fourCT\">2-drug trial<\/a>.\u00a0Her family leads PRF\u2019s <a href=\"https:\/\/www.progeriaresearch.org\/new-jersey-chapter.html\">New Jersey Chapter<\/a>,\u00a0<a href=\"https:\/\/www.teamzoey.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Team Zoey<\/a>, which is helping PRF to raise the funds needed to pay for Zoey and the other new children entering the trial.\u00a0Follow Zoey on <a href=\"https:\/\/www.facebook.com\/pages\/Team-Zoey\/354642757898903?sk=wall\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook<\/a> and <a href=\"https:\/\/twitter.com\/SupportTeamZoey\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a> too![\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Claudia<\/h1><p><img class=\"wp-image-358 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/claudia-with-frame.jpg\" width=\"150\" height=\"131\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161976628{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Claudia, from Portugal, who is 20 years old. Her favorite color is Blue, favorite school subject is Foreign Languages, and her favorite food is \u201cPunched\u201d baked potatoes with salted cod (In Portuguese it is \u201cBatata \u00e1 murro com Bacalhau\u201d). She also loves music, dancing, and going out with friends.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Beandri<\/h1><p><img class=\"wp-image-355 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Beandri-w-puppy.jpg\" width=\"150\" height=\"193\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161987580{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Beandri is 13 years old, and from South Africa. She loves all girly stuff like a normal girl of her age, especially make-up, dresses and looking pretty. She loves listening to music and singing along to her favorite songs. She is in the school choir and enjoys it tremendously. She loves her Yorkies, and has three older brothers who love her very much. Follow Beandri on facebook \u2013\u00a0 <a href=\"https:\/\/www.facebook.com\/groups\/beandri\/#_=_\" target=\"_blank\" rel=\"noopener noreferrer\">Beandri, our Inspiration.<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Enzo<\/h1><p><img class=\"alignnone size-full wp-image-1591 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/enzo.jpg\" alt=\"\" width=\"150\" height=\"167\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161995230{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Enzo is an adorable seven year old boy from Australia. He is a whirlwind \u2013 constantly in motion, smiling and always having fun. \u201cHe loves anything with wheels, Mario Kart and riding motorcycles\u201d says his mother, Catherina. \u201cHe plays with his planes, Legos and builds tracks for his trains.\u201d He spends time playing board games and making puzzles.\u00a0 He goes to school full time and loves his teachers and friends, who help Team Enzo with their fundraising. Enzo is one of the youngest children so far to enroll in PRF\u2019s Clinical Trial, coming to Boston in April, 2015 at age 3 for his first treatment. Enzo visited the PRF offices on his trip, and we saw firsthand how active and happy he is and his mother says, \u201cEnzo is a big boy now who is full of life and extremely happy.\u201d\u00a0 See Enzo in motion and meet his family in this <a href=\"https:\/\/m.youtube.com\/watch?v=QEUumIaxM9M\" target=\"_blank\" rel=\"noopener noreferrer\">special video<\/a>. You can also support Team Enzo on their <a href=\"https:\/\/prf.donorpages.com\/TeamEnzoFundraising\/CatherinaLlontop\/\" target=\"_blank\" rel=\"noopener noreferrer\">fundraising page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Cameron<\/h1><p><img class=\"wp-image-359 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Cam-with-art-project-1.jpg\" width=\"150\" height=\"193\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162037487{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Cam is an active, sports-loving 12-year-old! Cam\u2019s favorites are the color blue, chocolate ice cream, pasta, math, gym, playing sports and video games. His favorite teams are the Pittsburgh Penguins and the Steelers. Cam\u2019s family in the Pittsburgh, Pennsylvania area have created Team Cam, one of our\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pennpit_chapter.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&q=https:\/\/www.progeriaresearch.org\/pennpit_chapter.html&source=gmail&ust=1509279750428000&usg=AFQjCNHyDq4fXgEAqpKyotbOIoQYn137yQ\">Pennsylvania<\/a>\u00a0Chapters. They hold events to raise awareness and funds for Progeria research, including Cam\u2019s Course and HatsON. Watch Cam\u2019s video to learn more about him and his family:\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=UF_2sHztfwI\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&q=https:\/\/www.youtube.com\/watch?v%3DUF_2sHztfwI&source=gmail&ust=1509279750428000&usg=AFQjCNGkTSjhaNR_InYRrEqRLP3q3TjAXw\">https:\/\/www.youtube.<wbr \/>com\/watch?v=UF_2sHztfwI<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Josiah<\/h1><p><img class=\"wp-image-363 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/josiah-on-first-baseMTK.jpg\" width=\"150\" height=\"132\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162057351{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Josiah, quite the character whose love of baseball had captured the attention of sports fans everywhere, passed away on December 24, 2018 at age 14. Josiah was featured in 2010 and 2017 on\u00a0ESPN\u2019s E:60, and has inspired many with his courage, including his very favorite player, Ryan Howard of the Philadelphia Phillies. Chosen by ABC as a\u00a0<a href=\"https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id=14029162\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id%3D14029162&source=gmail&ust=1547646489488000&usg=AFQjCNGHOV9V6FQb7HKDHNtUe4TjxSjTJw\">\u201cPerson of the Week\u201d\u00a0<\/a>in 2011, Josiah affected people because, as his mom Jennifer says, \u201cHe didn\u2019t let his condition stop him. He was placed here to touch people\u2019s lives.\u201d Josiah served as\u00a0<a href=\"https:\/\/www.centredaily.com\/sports\/article171690452.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.centredaily.com\/sports\/article171690452.html&source=gmail&ust=1547646489488000&usg=AFQjCNFzpw4D1uPJ4i0w-8uTzr9OhNTezw\">Honorary Bench Coach for the State College Spikes<\/a>\u00a0(A \u2013 Cardinals) baseball team, earning the 2015 Mitauer \u201cGood Guy\u201d Award for his contribution to their championship season and for being a generous, courageous and passionate human being away from the field.\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=-ZQ1Yb7QdDo\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3D-ZQ1Yb7QdDo&source=gmail&ust=1547646489488000&usg=AFQjCNFUQ72_AlP4m56j9ykppl-ujIC3FQ\">This heartwarming video<\/a>\u00a0shows how close the team came to their inspirational bench coach during the 2014 season.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text css=\".vc_custom_1498500472166{border-radius: 2px !important;}\"]<\/p><h1 style=\"text-align: center;\">Carly<\/h1><p><img class=\"wp-image-363 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Carly_Heart_2016.jpg\" alt=\"\" width=\"150\" height=\"225\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162067037{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Carly-Q, as she is affectionately called by friends and family, is an adorable, unstoppable bundle of energy! Carly enjoys DIY projects, making slime and caring for her numerous baby dolls. \u00a0She also loves watching and creating youtube videos.\u00a0<a href=\"https:\/\/www.youtube.com\/user\/TeamCarlyQ\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/user\/TeamCarlyQ<\/a><\/p><p>In 2012,\u00a0Carly Cares, a 501(c)3 non-profit organization was founded\u00a0to support progeria families and researchers. Their signature event is held in September called \u201cCarly\u2019s Party - for the Cure!\u201d- an event that gets bigger each year!<\/p><p>Carly attends school and enjoys math. She loves Curious George and the movie SING!. In July 2013, Carly joined the Progeria Drug Trial, coming to Boston to enroll with her friend Zoey and in April 2016, they were the first to enroll in the new, 2-drug trial. \u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=reh9GvH9Jis\" target=\"_blank\" rel=\"noopener noreferrer\">Click Here<\/a> to watch a short video of her with Zoey in Boston.\u00a0\u00a0Check out Carly Q on <a href=\"https:\/\/www.facebook.com\/teamcarlyq\" target=\"_blank\" rel=\"noopener noreferrer\">facebook<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Little Lindsay<\/h1><p><img class=\"wp-image-365 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Lindsay-lying-on-sideMTK.jpg\" width=\"150\" height=\"147\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162073381{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Lindsay is a bundle of energy and all smiles! Lindsay is an extremely intelligent girl with a wild sense of humor and infectious laugh. She loves school, her friends, and her many hobbies, most of which include a lot of movement! Lindsay was featured with Hayley and Kaylee on the 2010 Barbara Walters 20\/20\u00a0Special <a href=\"https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id=14185425\" target=\"_blank\" rel=\"noopener noreferrer\">\u20187 Going on 70\u2019<\/a>. Visit her web site,\u00a0<a href=\"https:\/\/littlelindsay.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">LittleLindsay.com<\/a>, to see lots of pictures and learn about her yearly event, <em>Miles for Miracles<\/em>, organized by PRF\u2019s\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/michigan_chapter.html\" target=\"_blank\" rel=\"noopener noreferrer\">Michigan<\/a>\u00a0chapter run by\u00a0Lindsay's loving parents, supportive family and friends.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Hayley<\/h1><p><img class=\"wp-image-362 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/hayley-blue-MTK.jpg\" width=\"150\" height=\"182\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162088099{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Hayley, a teenager from England with Progeria who captured the hearts of many, passed away in April, 2015 at the age of 17. Hayley won the prestigious Children of Courage Award and appeared in several documentaries and stories about Progeria. Read about Hayley on this <a href=\"https:\/\/www.facebook.com\/pg\/Hayley-Okines-Old-Before-My-Time-301078666575535\/about\/?ref=page_internal\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook page<\/a>\u00a0and in her books,\u00a0<a href=\"https:\/\/www.amazon.co.uk\/Old-Before-My-Time-ebook\/dp\/B008G5LSC0\/ref=cm_cr_pr_product_top\" target=\"_blank\" rel=\"noopener noreferrer\">Old Before My Time<\/a>,\u00a0and <a href=\"https:\/\/www.amazon.com\/Young-Heart-Hayley-teenager-Progeria-ebook\/dp\/B00OOQIY7C\" target=\"_blank\" rel=\"noopener noreferrer\">Young at Heart<\/a>, about living with Progeria. \"My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.\u201d[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Nathan & Bennett<\/h1><p><img class=\"alignnone size-full wp-image-1590 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nathan-and-Bennet-2011.jpg\" alt=\"\" width=\"150\" height=\"142\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162094233{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Nathan and Bennett are brothers with Progeria who live outside of Philadelphia, PA with their parents, older sister Libby, and dog Ruby. They both have a rare form of Progeria called Mandibuloacral Dysplasia (MAD) and have similar medical conditions to children with classic Progeria. Nathan 13 and Bennett is ten. Nathan is very cautious, responsible and academically minded.\u00a0 He plays violin, trumpet and loves anything science related.\u00a0 Bennett is more \u2018carefree\u2019 and gets away with a lot because of his charming smile and goofy personality.\u00a0 He loves anything sports related and plays football for hours outside, regardless of the weather!\u00a0 Both are obsessed with Star Wars, Minecraft and of course, their electronic devices!\u00a0 Despite the differences in their ages and personalities, these two are best friends!\u00a0 See their beautiful brotherhood\/friendship and meet their family in this\u00a0<a href=\"https:\/\/www.facebook.com\/specialbooksbyspecialkids\/videos\/1140314192737226\/\">heartwarming interview<\/a>\u00a0by\u00a0<em>Special Books for Special Kids<\/em>. Their family and friends created\u00a0<em>\u201cFighting for Their Future\u201d<\/em>,\u00a0the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pennsylvania-philadelphia-chapter\/\">Philadelphia, Pennsylvania Chapter for PRF<\/a>\u00a0to help raise awareness and funds for Progeria research. We are very excited and happy to work with them on their many events, including their signature, fun event\u00a0\u201c<em>Make a Splash for Nathan and Bennett<\/em>\u201d.\u00a0 For more information on this dynamic duo please visit their\u00a0<a href=\"https:\/\/www.facebook.com\/pg\/nathanandbennett\/about\/?ref=page_internal\">Facebook Page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Sweet Kaylee<\/h1><p><img class=\"wp-image-364 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/KayleeCheerMTK.jpg\" width=\"150\" height=\"101\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162100148{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Kaylee is from Ohio and is fifteen years old. Kaylee\u2019s family and friends started PRF\u2019s\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/ohio_chapter.html\">Ohio Chapter\u00a0<\/a>in 2006, and have had tremendous success with its signature event, Kaylee\u2019s Course. More recently, they spend a night each summer at their local ice cream shop, Freeze Daddy\u2019s to raise money for PRF. Kaylee and her brothers enjoy serving ice cream all night, and attendees vie for raffle prizes and check out some vintage cars. Kaylee is quite the local celebrity and a very busy girl, you can also find Kaylee on musical.ly, where she has over 3 million fans! Keep up with Kaylee by joining her\u00a0<a href=\"https:\/\/www.facebook.com\/groups\/111892979356\/\">Facebook Group!<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Zach<\/h1><p><img class=\"wp-image-469 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Zach-with-Katie-yellow-June-2014.jpg\" width=\"150\" height=\"200\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162106591{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Zach is twelve years old and lives in Lexington, Kentucky in the USA (Go Cats!) Zach loves the color yellow and is addicted to Minecraft videos. He loves traveling, being in the Cub Scouts and listening to classic rock and roll music. Zach excels in math and recess at school. He loves pizza, cheese bread, cheeseburgers and chicken fingers. Zach and his parents were guests (with Carly Q) on The Katie Show in June of 2014. Katie Couric is a devoted supporter of children with Progeria. Katie made Zach\u2019s year by giving him the most awesome gift ever\u2026.tickets to his favorite rock band, Queen! Zach\u2019s parents host several fundraisers yearly and formed the Kentucky Chapter of PRF in 2009. \u00a0Zach appears with <a href=\"https:\/\/www.youtube.com\/watch?v=ORgY4zDYswo\">NHRA Champion Erica Enders<\/a>\u00a0and motorcycle champion\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=azkxOB5WaoQ\">Kyle Wyman<\/a>\u00a0a Public Service Announcements, and his contagious energy and smile will brighten your day \u2013 follow Team Zach Attack\u00a0and the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/kentucky_chapter.html\">Kentucky Chapter\u2019s\u00a0<\/a>activities.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Michiel & Amber<\/h1><p><img class=\"wp-image-366 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Michiel-and-Amber.jpg\" width=\"150\" height=\"194\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162117038{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Michiel, 20, who loves snowboarding and kart racing, computer games, hanging with his friends, DJ\u2019ing, and \u201cThe Big Bang Theory\".\u00a0 His 13-year-old sister Amber loves to horse around with Michiel, gymnastics, dancing, the color green and and her mobile phone. Read about these very close siblings from Belgium on their <a href=\"https:\/\/www.progeria.be\/?lang=en\">multi-lingual site<\/a>\u00a0created with love by their parents. Learn through the detailed diary about their experiences living with Progeria, and the life of this wonderful boy and girl who bring so much joy to all who know them. You can also stay in touch with them on\u00a0<a href=\"https:\/\/www.facebook.com\/pages\/Ik-ben-michiel\/204907719690404\">Michiel\u2019s Facebook page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Nihal<\/h1><p><img class=\"wp-image-373 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nihal-with-Lamborghini-Feb-2015.jpg\" width=\"150\" height=\"158\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162123606{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Nihal from Mumbai, India, passed away in 2016 at the age of 15. Nihal was a\u00a0big science fan who loved to paint. You can see some of his wonderful artwork on his Facebook page, <a href=\"https:\/\/www.facebook.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">TEAM NIHAL<\/a> and on his <a href=\"https:\/\/twitter.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>, both still active by his Dad, Srinivas. One of Nihal\u2019s greatest dreams was to ride in a Lamborghini-a dream that came true early in 2015 at Lamborghini Mumbai, who surprised Nihal for his 14th birthday. Nihal was a pivotal figure in the campaign <a href=\"https:\/\/twitter.com\/hashtag\/Finding60inIndia?src=hash\" target=\"_blank\" rel=\"noopener noreferrer\">#Finding60inIndia<\/a>, part of PRF\u2019s Find the Other 150 Campaign in partnership with India\u2019s MediaMedic Communications. \u00a0It is estimated there are 60 children in India who we are looking to identify and connect with so that they can get the unique help they need, including participation in the PRF-funded clinical drug trials. Watch this <a href=\"https:\/\/m.youtube.com\/watch?v=JxWo4k5iJpU&feature=youtu.be\" target=\"_blank\" rel=\"noopener noreferrer\">video featuring Nihal<\/a> for more information.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4746","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Meet the Kids | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"Many families have created beautiful web and social media sites devoted to their children. 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