{"id":732,"date":"2017-02-25T21:00:58","date_gmt":"2017-02-25T21:00:58","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=732"},"modified":"2026-05-08T16:37:29","modified_gmt":"2026-05-08T20:37:29","slug":"quick-facts","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/kk\/quick-facts\/","title":{"rendered":"\u0416\u044b\u043b\u0434\u0430\u043c \u0444\u0430\u043a\u0442\u0456\u043b\u0435\u0440"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.16&#8243; border_width_bottom=&#8221;55px&#8221; border_color_bottom=&#8221;#29327a&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.16&#8243; title_font_size=&#8221;55&#8243; background_color=&#8221;#29327a&#8221; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/About-Header.jpg&#8221; background_position=&#8221;center_left&#8221; custom_padding=&#8221;9vw||9vw||true&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|56px||&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; title_font_size_tablet=&#8221;45px&#8221; title_font_size_phone=&#8221;40px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; z_index_tablet=&#8221;500&#8243; custom_css_main_element=&#8221;background-position: center 18% !important;&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1>Progeria<\/h1>\n<h1>Quick Facts<\/h1>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;1&#8243; specialty=&#8221;on&#8221; padding_left_1=&#8221;35px&#8221; padding_left_2=&#8221;35px&#8221; padding_2_tablet=&#8221;|||0px&#8221; padding_2_phone=&#8221;|||0px&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class_1=&#8221;sidebar-secondary-nav&#8221; module_class=&#8221;handprint-bg&#8221; _builder_version=&#8221;4.16&#8243; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png&#8221; parallax=&#8221;on&#8221; parallax_method=&#8221;off&#8221; inner_width=&#8221;100%&#8221; inner_max_width=&#8221;100%&#8221; custom_padding=&#8221;0|0px|54px|0px|false|false&#8221; z_index_tablet=&#8221;500&#8243; border_width_top=&#8221;10px&#8221; border_color_top=&#8221;#8fd2ed&#8221; use_custom_width=&#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_sidebar area=&#8221;et_pb_widget_area_16&#8243; disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;subpage-sidebars&#8221; _builder_version=&#8221;4.16&#8243; animation_style=&#8221;fade&#8221; z_index_tablet=&#8221;500&#8243; border_width_right=&#8221;5px&#8221; global_colors_info=&#8221;{}&#8221;]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner column_structure=&#8221;1_2,1_2&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;1_2&#8243; 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 admin_label=&#8221;PRF BY THE NUMBERS &#8221; _builder_version=&#8221;4.27.5&#8243; header_4_font_size=&#8221;24px&#8221; animation_direction=&#8221;top&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"wpb_text_column wpb_content_element \">\n<div class=\"wpb_wrapper\">\n<h4><strong>PRF BY THE NUMBERS\u00a0<\/strong><\/h4>\n<p><em>As of March 31, 2026<\/em><\/p>\n<ul>\n<li>Identified children\/young adults living with Progeria and Progeroid Laminopathies: 216* in 52 countries<\/li>\n<li>*155 of these children\/young adults have Hutchinson-Gilford Progeria Syndrome (HGPS, or Progeria), and the other 58 have progeroid laminopathies.<\/li>\n<li>PRF-funded Progeria Clinical Drug Trials: 5<\/li>\n<li>Grants funded: 85, totaling $9.3 million<\/li>\n<li>Cell lines in the PRF Cell &amp; Tissue Bank: 211<\/li>\n<li>Children in PRF\u2019s Medical &amp; Research Database:\u00a0 224<\/li>\n<li>International Scientific Meetings on Progeria: 15<\/li>\n<li>Number of languages into which PRF\u2019s program and medical care materials are translated: 38<\/li>\n<\/ul>\n<p>*157 of these children\/young adults have Hutchinson-Gilford Progeria Syndrome (HGPS or Progeria) and the other 59 have Progeroid Laminopathies.<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=&#8221;1_2&#8243; 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_cta title=&#8221;Mission&#8221; button_url=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/05\/Quick-Facts-March-31-2026-Final.pdf&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rIiwic2V0dGluZ3MiOnsiYmVmb3JlIjoiIiwiYWZ0ZXIiOiIiLCJ0ZXh0IjoicG9zdF90aXRsZSIsImN1c3RvbV90ZXh0IjoiIn19@&#8221; admin_label=&#8221;Fact sheet pdf &#038; Call to Action&#8221; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;button_text&#8221; background_color=&#8221;#29327a&#8221; custom_margin=&#8221;|||35px&#8221; custom_margin_tablet=&#8221;|||0px&#8221; custom_margin_phone=&#8221;&#8221; custom_margin_last_edited=&#8221;on|desktop&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;right&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>To Discover Treatments and the Cure for Hutchinson-Gilford Progeria and its Aging-related Disorders, Including Heart Disease.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_cta][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;0px|35px|35px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner 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 admin_label=&#8221;What is Progeria? &#8221; _builder_version=&#8221;4.27.5&#8243; header_4_font_size=&#8221;24px&#8221; custom_margin=&#8221;30px||30px||true&#8221; animation_direction=&#8221;top&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"wpb_text_column wpb_content_element \">\n<div class=\"wpb_wrapper\">\n<h4><strong>What is Progeria?\u00a0<\/strong><\/h4>\n<p>Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition of accelerated aging in children. <span>Without treatment, c<\/span>hildren with Progeria die of the same heart disease that affects millions of normally aging adults (arteriosclerosis), but at an average age of just 14.5 years. Remarkably, their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.<\/p>\n<p>For more information on the cause of Progeria, click <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2020\/02\/What-is-Progeria-from-LATS.mp4\" target=\"_blank\" rel=\"noopener noreferrer\">here<\/a> to watch a brief overview video narrated by Dr. Leslie Gordon, taken from <em>Life According to Sam<\/em> (2013).<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.5&#8243; header_font=&#8221;||||||||&#8221; header_4_font=&#8221;||||||||&#8221; header_4_font_size=&#8221;24px&#8221; animation_direction=&#8221;top&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"wpb_text_column wpb_content_element \">\n<div class=\"wpb_wrapper\">\n<h4><strong>About PRF<\/strong><\/h4>\n<p>The Progeria Research Foundation (PRF) is the driving force behind the global effort to understand, treat and ultimately cure Hutchinson-Gilford Progeria Syndrome (Progeria), a rare and fatal genetic disease that causes rapid aging in children. Founded by the family of Sam Berns after his diagnosis in 1999, PRF has enabled or led every major scientific breakthrough in the field, from discovery of the gene that causes the disease to the first FDA-approved treatment, lonafarnib, to the advancement of gene-editing approaches now in development. Through rigorous science, global research infrastructure and close partnership with the worldwide patient community, PRF is advancing next-generation therapies, expanding diagnosis and care, and leading the Path to Cure Progeria program to determine whether a one-time gene-editing therapy can offer a durable, potentially curative treatment.<o:p><\/o:p><\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=&#8221;1_2,1_2&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;0px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px|50px|35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;1_2&#8243; 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 admin_label=&#8221;Total Dollars Raised&#8221; _builder_version=&#8221;4.16&#8243; header_text_align=&#8221;center&#8221; header_font_size=&#8221;41px&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1>Total Revenue<\/h1>\n<p>[\/et_pb_text][et_pb_number_counter title=&#8221;1999 through March 31, 2026&#8243; number=&#8221;100,293,936&#8243; percent_sign=&#8221;off&#8221; disabled_on=&#8221;on|on|off&#8221; admin_label=&#8221;Number Counter&#8221; module_class=&#8221;dollar&#8221; _builder_version=&#8221;4.27.5&#8243; title_level=&#8221;h5&#8243; number_font_size=&#8221;65px&#8221; custom_margin=&#8221;36px||36px||true&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<br \/>\n[\/et_pb_number_counter][et_pb_number_counter title=&#8221;1999 through March 31, 2026&#8243; number=&#8221;100,293,936&#8243; percent_sign=&#8221;off&#8221; disabled_on=&#8221;off|off|on&#8221; module_class=&#8221;dollar&#8221; _builder_version=&#8221;4.27.5&#8243; title_level=&#8221;h5&#8243; title_font=&#8221;||||||||&#8221; number_font=&#8221;||||||||&#8221; number_font_size=&#8221;60px&#8221; custom_margin=&#8221;36px||36px||true&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<br \/>\n[\/et_pb_number_counter][\/et_pb_column_inner][et_pb_column_inner type=&#8221;1_2&#8243; 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;4.24.0&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>More than 80% of PRF\u2019s annual expenses are consistently dedicated to its programs and services \u2013 one factor in our achieving a coveted 4-star rating from Charity Navigator ten years in a row.<\/p>\n<p>The support we have received made the Progeria gene discovery, the Progeria clinical trials and all of our other extraordinary progress possible.\u00a0 With the help of current and new supporters, we\u00a0<em>will<\/em>\u00a0win this race against time and find treatments and the cure for these special children. Moreover, Progeria treatment discoveries may also help millions with heart disease and the entire aging population.<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.16&#8243; background_color=&#8221;#29327a&#8221; custom_margin=&#8221;41px||&#8221; custom_margin_tablet=&#8221;0px||&#8221; custom_margin_phone=&#8221;&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;39.4375px|20px|35px|20px|false|true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;right&#8221; animation_intensity_slide=&#8221;25%&#8221; z_index_tablet=&#8221;500&#8243; border_width_bottom=&#8221;10px&#8221; border_color_bottom=&#8221;#8fd2ed&#8221; box_shadow_style=&#8221;preset1&#8243; box_shadow_blur=&#8221;38px&#8221; box_shadow_spread=&#8221;-12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner 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 admin_label=&#8221;PRF\u2019S Programs &#038; Services&#8221; _builder_version=&#8221;4.16&#8243; text_orientation=&#8221;center&#8221; background_layout=&#8221;dark&#8221; custom_padding=&#8221;|10px||10px||true&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1 data-fontsize=\"34\" data-lineheight=\"48\">PRF\u2019S Programs &amp; Services<\/h1>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=&#8221;1_2,1_2&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;1_2&#8243; 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 admin_label=&#8221;First-Ever Progeria Clinical Drug Trials and Treatment&#8221; _builder_version=&#8221;4.27.5&#8243; link_text_color=&#8221;#00b2e2&#8243; header_4_font_size=&#8221;24px&#8221; custom_margin=&#8221;|||&#8221; custom_padding_tablet=&#8221;||35px&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; animation_direction=&#8221;top&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"wpb_text_column wpb_content_element \">\n<div class=\"wpb_wrapper\">\n<h4><strong>First-Ever Progeria\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/clinical-trials\/\">Clinical Drug Trials<\/a><\/strong>\u00a0<strong>and Treatment<\/strong><\/h4>\n<p>PRF-Sponsored Clinical Drug Trials bring children from around the world for promising treatments that may help to improve disease and extend the lives of children with Progeria. <strong><em>In 2020, history was made with the United States Food and Drug Administration (FDA) approval of lonafarnib (trade name Zokinvy<\/em><\/strong><strong><em>\u2122), a farnesyltransferase inhibitor, as the first-ever treatment for Progeria and Progeroid Laminopathies<\/em><\/strong>.\u00a0 Lonafarnib has been shown to improve many aspects of the disease including the vital vascular system and <span>a 30% <\/span><span>average <\/span>increase <span>in <\/span><span>lifesp<\/span><span>a<\/span><span>n<\/span><span> with long-term treatment<\/span><span>. For more information on this exciting news, click <a href=\"https:\/\/www.progeriaresearch.org\/2023\/03\/15\/progerinbiomarker\/\">here<\/a>. <\/span><strong><em><span>PRF is now developing <\/span><span>a\u00a0<\/span><\/em><\/strong><span style=\"box-sizing: border-box; margin: 0px; padding: 0px;\"><em><strong>gene-editing drug designed to correct the mutation that causes Progeria<\/strong><\/em><\/span><span>\u00a0and advancing this <\/span><span>gene <\/span><span>therapy toward clinical trials. <\/span><span>\u00a0<\/span><strong><em> These are remarkable steps forward in the pursuit of a cure.\u00a0<\/em><\/strong><i><\/i><\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=&#8221;1_2&#8243; 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_cta title=&#8221;Let&#8217;s Find the Cure!&#8221; button_url=&#8221;https:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR&#8221; button_text=&#8221;Donate Now&#8221; _builder_version=&#8221;4.16&#8243; header_font=&#8221;||||||||&#8221; background_color=&#8221;#00b2e2&#8243; custom_button=&#8221;on&#8221; button_text_color=&#8221;#ffffff&#8221; button_font=&#8221;||||||||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div id=\"pastingspan1\">\n<article>Your donation helps The Progeria Research Foundation\u00a0<\/article>\n<article><em><strong>treat<\/strong><\/em>\u00a0children with Progeria today<\/article>\n<\/div>\n<div>and\u00a0<em><strong>cure<\/strong><\/em><strong>\u00a0<\/strong>them in the future.<\/div>\n<p>[\/et_pb_cta][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner 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_toggle title=&#8221;International Progeria Registry &#8221; open=&#8221;on&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;International Progeria Registry &#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>Maintains centralized information on children and families living with Progeria.\u00a0 This assures rapid distribution of any new information that may benefit the children.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/international-registry\/\" target=\"_blank\" rel=\"noopener noreferrer\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Cell &#038; Tissue Bank&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Cell &#038; Tissue Bank&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>PRF\u2019s Bank provides researchers with genetic and biological material from Progeria patients and their families so research on Progeria and other aging-related diseases can be performed to bring us closer to the cure.\u00a0 PRF has collected an impressive 214 cell lines from affected children and their family members worldwide including 10 Induced Pluripotent Stem Cell (iPSC) lines.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/cell-and-tissue-bank\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Medical &#038; Research Database&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Medical &#038; Research Database&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>The Database is a centralized collection of medical information from Progeria patients worldwide.\u00a0 The data is rigorously analyzed to help us understand more about Progeria and devise treatment recommendations. In 2010, this analysis contributed to PRF\u2019s comprehensive healthcare Handbook on Progeria aimed at optimizing quality of life. The <span>2019, 2<sup>nd<\/sup> Edition of the <\/span>Handbook is available in English, Spanish and Portuguese, Russian &amp; Italian.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/medical-database\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Diagnostic Testing&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Diagnostic Testing&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>This program was developed in the wake of the 2003 gene discovery so that children, their families and medical caretakers can get a definitive, scientific diagnosis.\u00a0 This can translate into earlier diagnosis, fewer misdiagnoses and early medical intervention to ensure a better quality of life for the children.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/the-prf-diagnostic-testing-program\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Scientific Workshops on Progeria&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Scientific Workshops on Progeria&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<ul>\n<li>PRF has organized 15 scientific conferences that have brought together scientists and clinicians from all over the world to share their expertise and cutting-edge scientific data.\u00a0 These workshops foster collaboration in the fight against this devastating disease.<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/scientific-meetings\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Research Grants&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Research Grants&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>Through peer review by our volunteer Medical Research Committee, PRF has funded projects throughout the world that have led to important discoveries about Progeria, heart disease, and <span>This <\/span>program <span>w<\/span>as updated <span>in <\/span><span>December<\/span> <span>2024 <\/span>to reflect current research needs<span>;<\/span> <span>There <\/span><span>is <\/span><span>now<\/span> <span> a proactive pathway, in which PRF identifies research needs and engages laboratories best suited to address them, and an investigator-driven pathway, in which PRF reviews investigator-initiated proposals.<\/span><\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/grants-funded\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;Publications &#038; Research&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;Publications &#038; Research&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>Both clinical and basic scientists have utilized the PRF grants, cells and tissues, and database; their discoveries are published in top-notch scientific journals.\u00a0 The average annual number of scientific publications on Progeria since 2002 is more than 20 times that of the previous 50 years!<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/scientific-publications\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&#8221;PRF Translation Program&#8221; open_toggle_background_color=&#8221;#f7f7f7&#8243; closed_toggle_text_color=&#8221;#ffffff&#8221; closed_toggle_background_color=&#8221;#00b2e2&#8243; icon_color=&#8221;#ffc15e&#8221; open_icon_color=&#8221;#ffc15e&#8221; admin_label=&#8221;PRF Translation Program&#8221; _builder_version=&#8221;4.27.5&#8243; title_text_color=&#8221;#00b2e2&#8243; background_color=&#8221;#ffffff&#8221; custom_margin=&#8221;10px||10px||true&#8221; custom_padding=&#8221;|50px||50px||true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;top&#8221; animation_intensity_slide=&#8221;25%&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p><strong><em>In touch with the world<\/em><\/strong>.\u00a0 With a prominent global presence, PRF eliminates barriers to communication for patients and their families, from around the world.\u00a0 This initiative has succeeded in translating PRF program and medical care materials into 38 languages.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/translators-needed\/\">Learn More<\/a><\/p>\n<p>[\/et_pb_toggle][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=&#8221;1_2,1_2&#8243; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;1_2&#8243; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; custom_css_main_element=&#8221;width: 30% !important;&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Sammy-Basso-in-USA-Square.jpg&#8221; align=&#8221;center&#8221; align_tablet=&#8221;center&#8221; align_phone=&#8221;&#8221; align_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.16&#8243; border_radii=&#8221;on|100%|100%|100%|100%&#8221; global_colors_info=&#8221;{}&#8221;]<br \/>\n[\/et_pb_image][\/et_pb_column_inner][et_pb_column_inner type=&#8221;1_2&#8243; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; custom_css_main_element=&#8221;width: 70% !important;&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.27.5&#8243; text_font=&#8221;||||||||&#8221; link_font=&#8221;||||||||&#8221; link_text_color=&#8221;#00b2e2&#8243; header_font=&#8221;||||||||&#8221; header_4_font=&#8221;||||||||&#8221; header_4_font_size=&#8221;24px&#8221; custom_margin=&#8221;|||&#8221; custom_margin_tablet=&#8221;|||25px&#8221; custom_margin_phone=&#8221;&#8221; custom_margin_last_edited=&#8221;on|desktop&#8221; custom_padding=&#8221;||50px&#8221; animation_direction=&#8221;top&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"wpb_text_column wpb_content_element \">\n<div class=\"wpb_wrapper\">\n<h4>Public Awareness<\/h4>\n<p>Our website provides access to the latest information on Progeria research and support for families. Through <strong><a href=\"https:\/\/www.facebook.com\/ProgeriaResearch\">Facebook<\/a>,\u00a0<a href=\"https:\/\/www.tiktok.com\/@progeriaresearch\">TikTok, <\/a><a href=\"https:\/\/www.instagram.com\/progeriaresearch\/\">Instagram<\/a>, <a href=\"http:\/\/www.youtube.com\/progeriaresearchorg\">YouTube<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/3520192\">LinkedIn<\/a>, <\/strong>and other mediums, PRF\u2019s direct social media reach is over 1 million. PRF\u2019s story has appeared on CNN, ABC News, Primetime, Dateline, The Katie Couric Show, NPR, The Associated Press, and The Today Show, in Time and People magazines, The New York Times, The Wall Street Journal and many other widely-read media outlets. In addition, the award-winning 2013 HBO film <a href=\"https:\/\/www.progeriaresearch.org\/life-according-to-sam\/\"><strong><em>Life According to Sam<\/em><\/strong><\/a> has raised awareness in a unique and inspiring way. PRF also manages\u00a0<strong><a href=\"https:\/\/www.progeriaresearch.org\/find-the-children\/\" target=\"_blank\" rel=\"noopener noreferrer\">Find the Children<\/a><\/strong>,\u00a0a global awareness campaign to find children with Progeria worldwide, so they can get the unique help they need.<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.16&#8243; background_color=&#8221;#29327a&#8221; custom_margin=&#8221;41px||&#8221; custom_margin_tablet=&#8221;0px||&#8221; custom_margin_phone=&#8221;&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;39.4375px|20px|35px|20px|false|true&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;right&#8221; animation_intensity_slide=&#8221;25%&#8221; z_index_tablet=&#8221;500&#8243; border_width_bottom=&#8221;10px&#8221; border_color_bottom=&#8221;#8fd2ed&#8221; box_shadow_style=&#8221;preset1&#8243; box_shadow_blur=&#8221;38px&#8221; box_shadow_spread=&#8221;-12px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner 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 admin_label=&#8221;Who&#8217;s Who at PRF?&#8221; _builder_version=&#8221;4.16&#8243; text_orientation=&#8221;center&#8221; background_layout=&#8221;dark&#8221; custom_padding=&#8221;|10px||10px||true&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1 data-fontsize=\"34\" data-lineheight=\"48\">Who&#8217;s Who at PRF?<\/h1>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner 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_team_member name=&#8221; Audrey Gordon, Esq.&#8221; position=&#8221;President and Executive Director&#8221; image_url=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Audrey-gala-09-square.jpg&#8221; admin_label=&#8221; Audrey Gordon, Esq.&#8221; module_class=&#8221;prf-person-module&#8221; _builder_version=&#8221;4.16&#8243; custom_margin=&#8221;||45px&#8221; link_option_url=&#8221;mailto:agordon@progeriaresearch.org&#8221; link_option_url_new_window=&#8221;on&#8221; z_index_tablet=&#8221;500&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Working closely with the Board of Directors, officers, staff, and volunteers, Ms. Gordon is responsible for day-to-day management and for ensuring The Progeria Research Foundation\u2019s financial growth and program development.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=&#8221;Leslie Gordon, MD, PhD&#8221; position=&#8221;Medical Director&#8221; image_url=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Lelsiesp.jpg&#8221; admin_label=&#8221;Leslie Gordon, MD, PhD&#8221; module_class=&#8221;prf-person-module&#8221; _builder_version=&#8221;4.16&#8243; custom_margin=&#8221;||45px&#8221; link_option_url=&#8221;mailto:Leslie_Gordon@brown.edu&#8221; link_option_url_new_window=&#8221;on&#8221; z_index_tablet=&#8221;500&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Dr. Gordon co-founded PRF with friends and family after her son, Sam, was diagnosed with Progeria. Dr. Gordon oversees PRF\u2019s research-related programs, and is a co-chair for the Progeria clinical drug trials.\u00a0 She is an Associate Professor of Pediatrics Research at the Warren Alpert Medical School of Brown University and Hasbro Children\u2019s Hospital in Providence, RI, and a Staff Scientist at Boston Children\u2019s Hospital and Harvard Medical School.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=&#8221;Scott D. Berns, MD, MPH, FAAP&#8221; position=&#8221;Chair, Board of Directors&#8221; image_url=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Scott-Berns.jpg&#8221; admin_label=&#8221;Scott D. Berns, MD, MPH, FAAP&#8221; module_class=&#8221;prf-person-module&#8221; _builder_version=&#8221;4.27.4&#8243; custom_margin=&#8221;||45px&#8221; link_option_url=&#8221;mailto:sberns@progeriaresearch.org&#8221; link_option_url_new_window=&#8221;on&#8221; z_index_tablet=&#8221;500&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Dr. Berns, Sam\u2019s father, is a co-founder of The Progeria Research Foundation and serves as Chairman of the Board. He is a Board Certified Pediatrician and Clinical Professor of Pediatrics at the Alpert Medical School of Brown University.<br \/>He recently retired as \u00a0President and CEO of the National Institute for Children\u2019s Health Quality, an independent, nonprofit organization working to improve children\u2019s health.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=&#8221;Carlos Luiz Silva&#8221; position=&#8221;PRF Ambassador&#8221; image_url=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/03\/Carlos-WhatsApp-from-Tatiana-3-12-25.jpeg&#8221; admin_label=&#8221;Carlos&#8221; module_class=&#8221;prf-person-module&#8221; _builder_version=&#8221;4.27.4&#8243; position_font=&#8221;|700|||||||&#8221; position_text_color=&#8221;#00B2E2&#8243; custom_margin=&#8221;||45px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p align=\"left\">Carlos serves as PRF&#8217;s youth ambassador, sharing the unique perspective of his journey with Progeria through various media opportunities. Diagnosed with Progeria at age 4, he always gravitated toward toys that involved building and construction. Carlos is best known for being incredibly kind and smart and always putting a smile on people&#8217;s faces with his warmth and humor. Today, he is in 9th grade at a charter school in Cambridge, Massachusetts, where his favorite subjects are Science and History, with plans to graduate in either science or law. Carlos has always had a very bold and strong personality, working hard at everything he sets his mind to and never giving up on his dreams.<\/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; 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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>Sign Up<\/h2>\n<h2>for Our<\/h2>\n<h2>Updates!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][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:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR&#8221; button_text=&#8221;Donate Now&#8221; admin_label=&#8221;Together, we will find the cure!&#8221; module_class=&#8221;sign-btn&#8221; _builder_version=&#8221;4.16&#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; header_font_size_tablet=&#8221;&#8221; header_font_size_phone=&#8221;30px&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; body_font_size_tablet=&#8221;&#8221; body_font_size_phone=&#8221;&#8221; body_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>Together, we<\/h2>\n<h2><em>WILL<\/em><\/h2>\n<h2>find the cure!<\/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>\n","protected":false},"excerpt":{"rendered":"<p>Progeria \u0437\u0435\u0440\u0442\u0442\u0435\u0443 \u049b\u043e\u0440\u044b \u0431\u04af\u043a\u0456\u043b \u04d9\u043b\u0435\u043c \u0431\u043e\u0439\u044b\u043d\u0448\u0430 \u0445\u0430\u0431\u0430\u0440\u0434\u0430\u0440\u043b\u044b\u049b\u0442\u044b \u0430\u0440\u0442\u0442\u044b\u0440\u0443 \u04af\u0448\u0456\u043d \u043a\u0435\u04a3 \u0430\u0443\u049b\u044b\u043c\u0434\u044b \u0437\u0435\u0440\u0442\u0442\u0435\u0443\u043b\u0435\u0440 \u0436\u04af\u0440\u0433\u0456\u0437\u0434\u0456. \u0411\u0456\u0437\u0434\u0456\u04a3 \u049b\u044b\u0441\u049b\u0430\u0448\u0430 \u0430\u049b\u043f\u0430\u0440\u0430\u0442 \u043f\u0430\u0440\u0430\u0493\u044b\u043d\u0430\u043d \u043a\u04e9\u0431\u0456\u0440\u0435\u043a \u0431\u0456\u043b\u0456\u04a3\u0456\u0437.<\/p>","protected":false},"author":1,"featured_media":638,"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=\"Progeria Quick Facts\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\" link=\"url:https%3A%2F%2Fwww.progeriaresearch.org%2Fwp-content%2Fuploads%2F2017%2F02%2FPRF-QUICKFACTS-as-of-July-1.pdf||\"][vc_column_text]<\/p><p style=\"text-align: left;\" align=\"center\"><strong><img class=\"alignnone size-full wp-image-1469\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/04\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/3REVISED-PRF-QUICKFACTS-as-of-April-1-2019.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">QUICK FACTS<\/a><\/strong><\/p><p style=\"text-align: left;\" align=\"center\"><strong>MISSION: <\/strong>To Discover Treatments and the Cure for Hutchinson-Gilford Progeria Syndrome and its Aging-related Disorders, Including Heart Disease.<\/p><p><strong>PRF BY THE NUMBERS\u00a0<\/strong>as of April 1, 2019<\/p><ul><li>Identified children living with Progeria: 157* in 49 countries<\/li><li>PRF-sponsored Progeria Clinical Drug Trials: 5<\/li><li>Grants funded: 70, totaling $7.7 million<\/li><li>Cell lines in the PRF Cell & Tissue Bank: 212<\/li><li>Children in PRF\u2019s Medical & Research Database:\u00a0 178<\/li><li>International Scientific Meetings on Progeria: 11<\/li><li>Number of languages into which PRF\u2019s program and medical care materials are translated: 38<\/li><\/ul><p>*Includes 37 children in the Progeroid Laminopathy category who have\u00a0a mutation in the Lamin pathway, but do not produce progerin.[\/vc_column_text][vc_column_text]<\/p><h1>What is Progeria?<\/h1><p>Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition of accelerated aging in children. Children with Progeria die of the same heart disease that affects millions of normally aging adults (arteriosclerosis), but at an average age of just 14 years. Remarkably, their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.[\/vc_column_text][vc_column_text]<\/p><h1>About PRF<\/h1><p>The Progeria Research Foundation (PRF) was established in 1999 by\u00a0<a href=\"mailto:lgordon@progeriaresearch.org\">Drs. Leslie Gordon<\/a> and Scott Berns,\u00a0the parents of a child with Progeria,\u00a0along with many dedicated friends and family who saw the need for a medical research resource for the doctors, patients, and families of those with Progeria.\u00a0 Since that time, PRF has been the driving force behind the Progeria gene discovery and the first-ever Progeria drug treatment. PRF has developed programs and services to aid those affected by Progeria and the scientists who conduct Progeria research.\u00a0 Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria. PRF is hailed as a prime example of a successful translational research organization, moving from creation, to gene discovery, to first-ever drug treatment in just 13 years.[\/vc_column_text][vc_column_text]<\/p><h1>Total Dollars Raised<\/h1><p style=\"text-align: left;\" align=\"center\"><em>1999 through December 31, 2018<\/em>: <strong>$29,821,446<\/strong><\/p><p>More than 80% of PRF\u2019s annual expenses are consistently dedicated to its programs and services - one factor in our achieving a coveted 4-star rating from Charity Navigator five years in a row.<\/p><p>The support we have received made the Progeria gene discovery, the Progeria clinical trials and all of our other extraordinary progress possible.\u00a0 With the help of current and new supporters, we <em>will<\/em> win this race against time and find treatments and the cure for these special children. Moreover, Progeria treatment discoveries may also help millions with heart disease and the entire aging population.[\/vc_column_text][vc_column_text css=\".vc_custom_1549556944835{background-color: #ffffff !important;}\"]<\/p><h1>PRF\u2019S PROGRAMS & SERVICES<\/h1><ul><li><strong>First-Ever Progeria <a href=\"https:\/\/www.progeriaresearch.org\/clinical-trials\/\">Clinical Drug Trials<\/a><\/strong> <strong>and Treatment<\/strong><strong>:<\/strong>\u00a0 PRF-Sponsored Clinical Drug Trials bring children from around the world for promising treatments that may help to improve disease and extend the lives of children with Progeria. \u00a0<i>In 2012, history was made with the discovery that lonafarnib, a farnesyltransferase inhibitor, or FTI, is the first-ever treatment for Progeria, improving many aspects of the disease including the vital vascular system . More recent studies conclude that lonafarnib extends estimated lifespan. <\/i>In 2016, PRF initiated a two-drug trial, adding Everolimus, with the hope that the two drugs together will be even more effective than lonafarnib alone.\u00a0<i>These are remarkable steps forward in the pursuit of a cure.\u00a0<\/i><\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/international-progeria-registry\/\"><strong>International Progeria Registry<\/strong>\u00a0<\/a> maintains centralized information on children and families living with Progeria.\u00a0 This assures rapid distribution of any new information that may benefit the children.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/cell-and-tissue-bank\/\">Cell & Tissue Bank:<\/a> <\/strong>PRF\u2019s Bank provides researchers with genetic and biological material from Progeria patients and their families so research on Progeria and other aging-related diseases can be performed to bring us closer to the cure.\u00a0 PRF has collected an impressive 212 cell lines from affected children and their family members worldwide including 10 Induced Pluripotent Stem Cell (iPSC) lines.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/medical-database\/\">Medical & Research Database:<\/a> <\/strong>The Database is a centralized collection of medical information from Progeria patients worldwide.\u00a0 The data is rigorously analyzed to help us understand more about Progeria and devise treatment recommendations. In 2010, this analysis contributed to PRF\u2019s comprehensive healthcare Handbook on Progeria aimed at optimizing quality of life. The Handbook is available in English, Spanish and Portuguese, Russian & Italian.<\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/the-prf-diagnostic-testing-program\/\"><strong>Diagnostic Testing<\/strong>:<\/a> This program was developed in the wake of the 2003 gene discovery so that children, their families and medical caretakers can get a definitive, scientific diagnosis.\u00a0 This can translate into earlier diagnosis, fewer misdiagnoses and early medical intervention to ensure a better quality of life for the children.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/scientific_meetings\/\">Scientific Workshops on Progeria:<\/a> <\/strong>PRF has organized 12 scientific conferences that have brought together scientists and clinicians from all over the world to share their expertise and cutting edge scientific data. \u00a0These workshops foster collaboration in the fight against this devastating disease. \u00a0The\u00a0next meeting is September 20-22, 2018 in Boston, MA.<\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/grants-funded\/\"><strong>Research Grants:<\/strong><\/a>\u00a0Through peer review by our volunteer Medical Research Committee, PRF has funded projects throughout the world that have led to important discoveries about Progeria, heart disease and aging. PRF\u2019s research program has been updated as of September 2018 to reflect current research needs within the fields of Progeria, aging and heart disease.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/scientific-publications\/\">Publications and Research:<\/a> <\/strong>Both clinical and basic scientists have utilized the PRF grants, cells and tissues, and database; their discoveries are published in top-notch scientific journals.\u00a0 The average annual number of scientific publications on Progeria since 2002 is more than 20 times that of the previous 50 years!<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/translators-needed\/\">PRF Translation Program:<\/a> <\/strong><strong><em>In touch with the world<\/em><\/strong>.\u00a0 With a prominent global presence, PRF eliminates barriers to communication for patients and their families, from around the world.\u00a0 This initiative has succeeded in translating PRF program and medical care materials into 38 languages.<\/li><\/ul><ul><li><strong>Public Awareness:<\/strong>\u00a0progeriaresearch.org provides access to the latest information on Progeria research and support for families. \u00a0Through <strong><a href=\"https:\/\/www.facebook.com\/ProgeriaResearch\">Facebook<\/a>, <a href=\"https:\/\/twitter.com\/Progeria\">Twitter<\/a><\/strong> and other mediums, PRF\u2019s direct social media reach is over 1 million. PRF\u2019s story has appeared on CNN, ABC News, Primetime, Dateline, The Katie Couric Show, and The Today Show, in Time and People magazines, The New York Times, The Wall Street Journal and many other widely-read media outlets. In addition, the award-winning 2013 HBO film <a href=\"https:\/\/www.progeriaresearch.org\/life-according-to-sam\/\"><strong><em>Life According to Sam<\/em><\/strong><\/a>\u00a0has raised awareness in a unique and inspiring way.\u00a0\u00a0PRF also manages\u00a0<strong><a href=\"https:\/\/www.findtheother150.org\/\">Find the Other 150<\/a><\/strong>,\u00a0a global awareness campaign to find children with Progeria worldwide, so they can get the unique help they need.<\/li><\/ul><p>[\/vc_column_text][vc_column_text]<\/p><h1>WHO\u2019S WHO AT PRF?<\/h1><p><strong><a href=\"mailto:agordon@progeriaresearch.org\">Audrey Gordon, Esq., President and Executive <b>Director<\/b><\/a><br \/><\/strong>Working closely with the Board of Directors, officers, staff, and volunteers, Ms. Gordon is responsible for day-to-day management and for ensuring The Progeria Research Foundation's financial growth and program development.<\/p><p><a href=\"mailto:Leslie_Gordon@brown.edu\"><strong>Leslie B. Gordon, MD, PhD, Medical Director, Co-Founder<\/strong><\/a><br \/>Dr. Gordon co-founded PRF with friends and family after her son, Sam, was diagnosed with Progeria. Dr. Gordon oversees PRF\u2019s research-related programs, and is a co-chair for the Progeria clinical drug trials.\u00a0 She is an Associate Professor of Pediatrics Research at the Warren Alpert Medical School of Brown University and Hasbro Children\u2019s Hospital in Providence, RI, and a Staff Scientist at Boston Children\u2019s Hospital and Harvard Medical School.<\/p><p><a href=\"mailto:sberns@progeriaresearch.org\"><strong>Scott D. Berns, MD, MPH, FAAP, PRF Chairman of the Board, Co-Founder<\/strong><\/a><br \/>Dr. Berns, Sam\u2019s father, is a co-founder of The Progeria Research Foundation and serves as Chairman of the Board.\u00a0 He is a Board Certified Pediatrician and Clinical Professor of Pediatrics at the Alpert Medical School of Brown University. He is also President and CEO of the National Institute for Children\u2019s Health Quality, an independent, nonprofit organization working to improve children\u2019s health.<\/p><p><b>Meghan Waldron, PRF\u2019s Youth Ambassador<br \/><\/b>Meghan serves as a spokesperson for PRF, from the perspective of a youth with Progeria. Accomplished cellist and violinist, high school cross country and track team athlete, published poet \u2013 Meghan is a talented and busy 18-year-old living in Massachusetts.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-732","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Quick Facts | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"The Progeria Research Foundation has done extensive research to bring awareness across the globe. 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