La Dra. Gordon ha allanado el camino para encontrar tratamientos y la cura para las personas afectadas por progeria. Fue coautora del descubrimiento del gen de la progeria en 2003. Naturaleza<\/em>, autor principal del estudio de descubrimiento del tratamiento de la progeria de 2012 en Revista de la Asociaci\u00f3n M\u00e9dica Americana (JAMA). <\/em>Ha copresidido cuatro Ensayos cl\u00ednicos de f\u00e1rmacos contra la progeria<\/a> para ni\u00f1os con progeria en el Boston Children's Hospital.<\/p>\n La Dra. Gordon recibi\u00f3 su t\u00edtulo universitario de la Universidad de New Hampshire y su maestr\u00eda y doctorado de la Universidad de Brown.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Scott D. Berns, MD, MPH, FAAP” position=”Chair, Board of Directors” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Scott-Berns.jpg” admin_label=”Scott D. Berns, MD, MPH, FAAP” module_class=”prf-person-module” _builder_version=”4.21.0″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” global_colors_info=”{}”]<\/p>\n Despu\u00e9s de trabajar durante 14 a\u00f1os en la Oficina Nacional de March of Dimes, donde fue Vicepresidente S\u00e9nior de Programas de Cap\u00edtulos y Director M\u00e9dico Adjunto, en octubre de 2015 el Dr. Berns se convirti\u00f3 en Presidente y Director Ejecutivo del NICHQ (Instituto Nacional para la Calidad de la Salud Infantil), una organizaci\u00f3n independiente sin fines de lucro que trabaja para mejorar la salud de los ni\u00f1os.<\/p>\n Scott es un pediatra certificado y m\u00e9dico de urgencias pedi\u00e1tricas. Es profesor cl\u00ednico de pediatr\u00eda en la Facultad de Medicina Warren Alpert de la Universidad Brown y profesor cl\u00ednico de servicios de salud, pol\u00edticas y pr\u00e1cticas en la Escuela de Salud P\u00fablica Brown en Providence, Rhode Island. Obtuvo una maestr\u00eda en salud p\u00fablica de la Escuela de Salud P\u00fablica de Harvard con especializaci\u00f3n en salud, pol\u00edticas y gesti\u00f3n, y complet\u00f3 una beca de un a\u00f1o en la Casa Blanca, donde se desempe\u00f1\u00f3 como asistente especial del Secretario de Transporte de los EE. UU.<\/p>\n Scott ha recibido el premio Willis Wingert a la excelencia en investigaci\u00f3n en medicina de emergencia pedi\u00e1trica de la Academia Estadounidense de Pediatr\u00eda, un premio nacional de la Asociaci\u00f3n Perinatal Nacional, un premio al servicio de salud p\u00fablica del Departamento de Transporte de los EE. UU. y el premio Impact 2015 de la Fundaci\u00f3n y Asociaci\u00f3n de Becarios de la Casa Blanca.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Carlos” position=”PRF Ambassador” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/03\/Carlos-WhatsApp-from-Tatiana-3-12-25.jpeg” admin_label=”Carlos” module_class=”prf-person-module” _builder_version=”4.27.4″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n Carlos es embajador juvenil de PRF y comparte la perspectiva \u00fanica de su experiencia con la progeria a trav\u00e9s de diversos medios. Diagnosticado con progeria a los 4 a\u00f1os, <\/span>Siempre se sinti\u00f3 atra\u00eddo por los juguetes que implicaban construcci\u00f3n y edificaci\u00f3n. <\/span>Carlos es conocido por su incre\u00edble amabilidad e inteligencia, y por siempre sacar una sonrisa a la gente con su calidez y humor. Actualmente cursa noveno grado, donde sus materias favoritas son Ciencias e Historia, y planea graduarse en Ciencias o Derecho. Carlos siempre ha tenido una personalidad audaz y fuerte, trabajando duro en todo lo que se propone y nunca renunciando a sus sue\u00f1os.<\/span><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”In Memory of PRF Ambassador and Progeria Researcher, Sammy Basso” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2021\/08\/Sammybasso-headshot.jpg” admin_label=”In Memory of Sammy Basso” module_class=”prf-person-module” _builder_version=”4.27.2″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” global_colors_info=”{}”]<\/p>\n Sammy Basso era conocido y adorado en todo el mundo como portavoz de la PRF y de la comunidad de progeria. Falleci\u00f3 en octubre de 2024 a la edad de 28 a\u00f1os, siendo la persona de mayor edad que haya vivido con progeria cl\u00e1sica.<\/p>\n Nacido en 1995, a Sammy le diagnosticaron progeria a los dos a\u00f1os y desde los diez ha sido portavoz de la Asociaci\u00f3n Italiana Sammy Basso para la Progeria. En 2007, Sammy fue uno de los primeros en participar en los ensayos cl\u00ednicos de la PRF, donde prob\u00f3 el f\u00e1rmaco lonafarnib, ahora aprobado por la FDA, como el primer tratamiento para la progeria. En 2014, apareci\u00f3 en el documental de National Geographic \u201cIl Viaggio di Sammy\u201d (Los viajes de Sammy), que narraba el viaje de sus sue\u00f1os: recorrer la Ruta 66 en Estados Unidos desde Chicago hasta Los \u00c1ngeles con sus padres y un amigo.<\/u><\/u><\/p>\n En 2018, Sammy se gradu\u00f3 en Ciencias Naturales en la Universidad de Padua y present\u00f3 una tesis sobre un enfoque de edici\u00f3n gen\u00e9tica en ratones HGPS. M\u00e1s tarde ese a\u00f1o, fue galardonado con el t\u00edtulo de Caballero de la Orden del M\u00e9rito de la Rep\u00fablica Italiana por su investigaci\u00f3n en profundidad sobre discapacidades y su colaboraci\u00f3n con el gobierno italiano. En 2020, Sammy se convirti\u00f3 en miembro del grupo de trabajo regional y nacional de Veneto para la divulgaci\u00f3n de informaci\u00f3n sobre COVID-19 (art\u00edculos cient\u00edficos y de personas influyentes). En 2021, Sammy se gradu\u00f3 con una segunda licenciatura en Biolog\u00eda Molecular con una tesis sobre la intersecci\u00f3n de la Lamina A y la Interleucina-6, un enfoque para tratar la progeria al dirigirse a la prote\u00edna t\u00f3xica, conocida como progerina. <\/u><\/u><\/u><\/u>Escuche a Sammy en un panel en la Cumbre cient\u00edfica innovadora STAT 2021 aqu\u00ed<\/a>.\u200b<\/p>\n Apreciamos los recuerdos del extraordinario entusiasmo por la vida, el optimismo, la amabilidad y la brillantez de Sammy mientras hacemos lo que \u00e9l querr\u00eda que hici\u00e9ramos: continuar nuestra lucha por la cura.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”In Memory of John Tacket, PRF\u2019s first Youth Ambassador” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/john.jpg” admin_label=”In Memory of John Tacket” module_class=”prf-person-module” _builder_version=”4.16″ custom_margin=”||45px” global_colors_info=”{}”]<\/p>\n John Tacket, de 16 a\u00f1os, el primer embajador juvenil de la PRF, falleci\u00f3 el mi\u00e9rcoles 3 de marzo de 2004. John era una persona incre\u00edble que nunca dej\u00f3 que su enfermedad lo detuviera. Entre sus actividades escolares, su trabajo y su pasi\u00f3n por la bater\u00eda, le gustaba hablar con otras personas, especialmente con los ni\u00f1os, sobre la progeria porque sent\u00eda que era importante que la gente se educara al respecto. John fue un miembro clave del panel que anunci\u00f3 el hallazgo del gen de la progeria en abril de 2003 en Washington, DC. Respondi\u00f3 las preguntas de los periodistas y coment\u00f3 que fue un momento emocionante para \u00e9l y sus amigos. Estamos orgullosos de haber conocido a John y la PRF le estar\u00e1 eternamente agradecida por sus contribuciones para generar conciencia sobre la progeria y el trabajo de la PRF. Fue una inspiraci\u00f3n para todos nosotros. John ser\u00e1 extra\u00f1ado mucho.<\/p>\n Haga clic aqu\u00ed para ver una entrevista con John, tomada cuando ten\u00eda 13 a\u00f1os.<\/a><\/p>\n [\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 module_class=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d-2px|||||\u201d relleno_personalizado=\u201d0|0px|0|0px|falso|falso\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_superior=\u201d12px\u201d color_border_superior=\u201d#00b2e2\u2033 m\u00f3dulo_global=\u201d133\u2033 bloqueado=\u201ddesactivado\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_row estructura_columna=\u201d1_4,1_4,1_2\u2033 igualar=\u201dactivado\u201d clase_m\u00f3dulo=\u201d et_pb_row_ancho_completo\u201d versi\u00f3n_compilador=\u201d4.16\u2033 ancho=\u201d89%\u201d ancho_tableta=\u201d80%\u201d ancho_tel\u00e9fono=\u201d\u201d 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Intensidad de la animaci\u00f3n = "25%" URL de la opci\u00f3n del enlace = "https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz" Tama\u00f1o de fuente del encabezado para tableta = "Tama\u00f1o de fuente del encabezado para tel\u00e9fono = "30px" tama\u00f1o de fuente del encabezado, \u00faltima edici\u00f3n = \u00abactivado|escritorio\u00bb \u00edndice z_tableta = \u00ab500\u00bb radio del borde = \u00abactivado|25px|25px|25px|25px\u00bb informaci\u00f3n de colores globales = \u00ab{}\u00bb color de fondo del bot\u00f3n__hover_enabled = \u00abactivado\u00bb color de fondo del bot\u00f3n__hover = \u00ab#8fd2ed\u00bb color del borde del bot\u00f3n__hover_enabled = \u00abactivado\u00bb]<\/p>\n [\/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=\u201dDonar ahora\u201d admin_label=\u201d\u00a1Juntos encontraremos la cura!\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d bot\u00f3n_bg_color__hover=\u201d#8fd2ed\u201d bot\u00f3n_border_color__hover_enabled=\u201don\u201d]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column tipo=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/08\/2024-strip-footer-strip-copy.png\u201d title_text=\u201d2024 strip footer strip copy\u201d _builder_version=\u201d4.27.0\u2033 _module_preset=\u201ddefault\u201d custom_margin=\u201d35px||||false|false\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":" [et_pb_section fb_built=”1″ fullwidth=”on” disabled_on=”off|off|off” _builder_version=”4.16″ custom_padding=”0px|0px|0px|0|false|false” border_width_bottom=”55px” border_color_bottom=”#29327a” locked=”off” global_colors_info=”{}”][et_pb_fullwidth_header background_overlay_color=”rgba(0,0,0,0)” _builder_version=”4.16″ title_font=”||||||||” title_font_size=”55″ background_color=”#29327a” background_image=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/bubbles-header.jpg” background_position=”bottom_right” custom_padding=”11.5vw||11.5vw||true” custom_padding_tablet=”” custom_padding_phone=”|56px||” custom_padding_last_edited=”on|desktop” title_font_size_tablet=”45px” title_font_size_phone=”40px” title_font_size_last_edited=”on|phone” z_index_tablet=”500″ custom_css_main_element=”background-position: center !important;” global_colors_info=”{}”] Spokespeople [\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=”1″ use_custom_gutter=”on” gutter_width=”1″ specialty=”on” padding_left_1=”35px” padding_left_2=”35px” padding_2_tablet=”|||0px” padding_2_phone=”|||0px” padding_2_last_edited=”on|desktop” module_class_1=”sidebar-secondary-nav” module_class=”handprint-bg” _builder_version=”4.16″ background_image=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png” parallax=”on” parallax_method=”off” inner_width=”100%” inner_max_width=”100%” custom_padding=”0|0px|54px|0px|false|false” z_index_tablet=”500″ border_width_top=”10px” border_color_top=”#8fd2ed” use_custom_width=”on” width_unit=”off” custom_width_percent=”100%” […]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\t\t\t\t[vc_row][vc_column][vc_custom_heading text=\"Spokespeople\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\"][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\r\n Meghan is an accomplished cellist and violinist, high school cross country and track team athlete and published poet. She is a senior in high school and she lives with her family in Massachusetts.\u00a0 Meghan now serves as spokesperson for The Progeria Research Foundation, from the perspective of a young adult with Progeria.\u00a0 In 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.<\/p>\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_empty_space][vc_column_text] Working closely with the Board of Directors, committees, staff and volunteers, Ms. Gordon is responsible for ensuring The Progeria Research Foundation\u2019s financial growth, program development and day to day management.<\/p>\r\nMs. Gordon is a graduate of Tufts University and Northeastern University School of Law, and is an attorney licensed to practice in Massachusetts since 1988 and Florida since 1990. She has extensive civil litigation experience in both states. Locally, she is a past Trustee of Temple Beth Shalom in Peabody, Massachusetts, a member of the Peabody Chamber of Commerce, and has served on the Peabody Board of Registrars since 2006. Nationally, Ms. Gordon serves on the Board of Advisors of\u00a0Global Genes|RARE Project\u00a0and the\u00a0Rare Disease Report.\u00a0\u00a0She is the 2004 winner of the North of Boston Business and Professional Women of the Year award for non-profit organizations, and the 2005 recipient of the Mary Upton Ferrin Award for leadership in her community. She was honored as a Community Hero by Jewish Family Services in April 2009. Under her leadership as PRF\u2019s founding President and Executive Director, PRF was awarded a 4-star Charity Navigator rating, and received Research!America\u2019s 2014 Paul G. Rogers Distinguished Organization Advocacy Award for bringing progeria from obscurity to the forefront of successful translational research.\r\n\r\n 16-year-old John Tacket, PRF's first Youth Ambassador, passed away Wednesday, March 3rd, 2004. John was an incredible person who never let his condition slow him down. In between his school activities, work and passion for the drums, he welcomed talking to others, especially kids, about Progeria because he felt it was important that people be educated about it. John was a key member of the panel that announced the Progeria gene finding in April 2003 in Washington, DC. He answered reporters' questions and commented that it was an exciting time for him and his friends. We are proud to have known John and PRF is forever grateful for his contributions in raising awareness about Progeria and the work of PRF. He was an inspiration to us all. John will be missed greatly.<\/p>\r\nClick here to see an interview with John, taken when he was 13 years old.<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]\r\n\r\n[caption id=\"\" align=\"alignnone\" width=\"150\"]Inscribirse<\/h2>\n
Para nuestro<\/h2>\n
\u00a1Actualizaciones!<\/h2>\n
Juntos, nosotros<\/h2>\n
VOLUNTAD<\/em><\/h2>\n
\u00a1Encuentra la cura!<\/h2>\n
PRF Spokespeople<\/a><\/h1>\r\n
\r\n \t
![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/02\/Meghan-workshop-speech-2016-1.jpg\")
Meghan gives a captivating speech on the opening night of PRF\u2019s 2016 International Progeria Workshop.<\/span>[\/caption]\r\n\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\nMeghan Waldron<\/h1>\r\nPRF\u2019s Ambassador<\/strong>\r\n
![](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/Audrey-gala-09.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\nAudrey Gordon, Esq.<\/h1>\r\nPresident and Executive Director<\/strong>\r\n
\r\n\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_empty_space][vc_column_text]![\"\"](\"https:\/\/www.progeriaresearch.org\/assets\/images\/Lelsiesp.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Leslie Gordon, MD, PhD<\/h1>\r\nMedical Director<\/strong>\r\n\r\nLeslie Gordon is a co-founder of The Progeria Research Foundation and serves as the organization's volunteer Medical Director. Dr. Gordon is the Principal Investigator for ongoing PRF programs for Progeria, including the\u00a0PRF International Progeria Registry<\/a>,\u00a0Medical and Research Database<\/a>,\u00a0Cell and Tissue Bank<\/a>, and the\u00a0Genetic Diagnostics Program<\/a>. She has organized 8 National Institutes of Health-funded, international\u00a0scientific meetings<\/a>\u00a0on Progeria. She is Professor of Pediatrics Research at Hasbro Children\u2019s Hospital and the Alpert Medical School of Brown University in Providence, RI; Research Associate in Anesthesia at Harvard Medical School and Boston Children\u2019s Hospital and Research Scientist at Women & Infants Hospital, all in Boston, MA. She was co-author on the 2003 gene discovery for Progeria, lead author of the 2012 Progeria treatment discovery study, and is co-chair of four\u00a0Progeria clinical drug trials<\/a>\u00a0at Boston Children\u2019s Hospital.\r\n
![\"Scott](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/berns.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Scott D. Berns, MD, MPH, FAAP<\/h1>\r\nChair, Board of Directors<\/strong>\r\n\r\nAfter serving for 14 years at the March of Dimes National Office, where he was the Senior Vice President of Chapter Programs and Deputy Medical Office, in October 2015 Dr. Berns became President and CEO of the NICHQ (National Institute for Children\u2019s Health Quality), an independent, nonprofit organization working to improve children\u2019s health.\r\n\r\nScott is a board-certified pediatrician and pediatric emergency physician. He is a Clinical Professor of Pediatrics at the Warren Alpert Medical School of Brown University and Clinical Professor of Health Services, Policy and Practice at the Brown School of Public Health in Providence, RI. He earned a masters of public health from the Harvard School of Public Health with a concentration in health, policy and management, and completed a one-year White House Fellowship where he served as a Special Assistant to the U.S. Secretary of Transportation.\r\n\r\nScott has received the Willis Wingert Award for excellence in research in pediatric emergency medicine from the American Academy of Pediatrics, a national award from the National Perinatal Association, a public health service award from the U.S. Department of Transportation, and the 2015 Impact Award from the White House Fellows Foundation & Association.\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]
![\"John](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/John-jpg.jpg\")
\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>In Memory of John Tacket, PRF's first Youth Ambassador<\/h1>\r\n
![\"\"](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/000_0004sm.jpg\")
Thank you to the family of Megan Nighbor, who served as PRF\u2019s first ambassador family. The Nighbors were true trailblazers in raising awareness and fundraising, and continue to support PRF in these important activities.[\/caption]\r\n\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Steve, Sandy, Megan, Michaela and Josh Nighbor<\/h1>\r\nPRF's\u00a0 Ambassador Family 2005 \u2013 January 2010<\/strong>[\/vc_column_text][\/vc_column][\/vc_row]\t\t","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-964","page","type-page","status-publish","hentry"],"yoast_head":"\n