{"id":355,"date":"2019-04-15T13:54:51","date_gmt":"2019-04-15T13:54:51","guid":{"rendered":"http:\/\/beta.progeriaresearch.org.php72-4.lan3-1.websitetestlink.com\/?page_id=355"},"modified":"2025-10-09T09:22:51","modified_gmt":"2025-10-09T13:22:51","slug":"our-story","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/fr\/our-story\/","title":{"rendered":"Notre histoire"},"content":{"rendered":"

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Notre histoire<\/h1>\n

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Comment le PRF a \u00e9t\u00e9 form\u00e9<\/b><\/h1>\n

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\"\"Au cours de l\u2019\u00e9t\u00e9 1998, le Dr Leslie Gordon et le Dr Scott Berns ont appris que leur fils Sam, alors \u00e2g\u00e9 de 22 mois, avait \u00e9t\u00e9 diagnostiqu\u00e9 avec le syndrome de Hutchinson-Gilford de la prog\u00e9ria (Progeria), commun\u00e9ment appel\u00e9 syndrome de \u00ab vieillissement rapide \u00bb. Les parents de Sam ont rapidement constat\u00e9 qu\u2019il y avait un \u00e9norme manque d\u2019informations m\u00e9dicales et de ressources consacr\u00e9es \u00e0 la prog\u00e9ria. Ils ont reconnu qu\u2019il n\u2019y avait aucun endroit o\u00f9 ces enfants pouvaient se rendre pour obtenir de l\u2019aide m\u00e9dicale, aucun endroit o\u00f9 les parents ou les m\u00e9decins pouvaient se tourner pour obtenir des informations, et aucune source de financement pour les chercheurs qui voulaient faire des recherches sur la prog\u00e9ria. Le manque d\u2019informations disponibles pour les familles, combin\u00e9 au manque de recherches et de possibilit\u00e9s de financement de la recherche, a incit\u00e9 la famille de Sam, ainsi que leurs amis et coll\u00e8gues, \u00e0 cr\u00e9er la Progeria Research Foundation, Inc. (\u00ab PRF \u00bb), la seule organisation \u00e0 but non lucratif au monde d\u00e9di\u00e9e \u00e0 la recherche sur la prog\u00e9ria.<\/p>\n

Sam est d\u00e9c\u00e9d\u00e9 le 10 janvier 2014, laissant derri\u00e8re lui un h\u00e9ritage d'inspiration qui pousse aujourd'hui PRF et ses partisans \u00e0 poursuivre la qu\u00eate d'un rem\u00e8de, avec une d\u00e9termination, une passion et, surtout, de l'amour.<\/p>\n<\/div>\n<\/div>\n

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Au cours de l\u2019\u00e9t\u00e9 1998, le Dr Leslie Gordon et le Dr Scott Berns ont appris que leur fils Sam, alors \u00e2g\u00e9 de 22 mois, avait \u00e9t\u00e9 diagnostiqu\u00e9 avec le syndrome de Hutchinson-Gilford de la prog\u00e9ria (\u00ab prog\u00e9ria \u00bb), commun\u00e9ment appel\u00e9 syndrome de \u00ab vieillissement pr\u00e9matur\u00e9 \u00bb. Les parents de Sam ont rapidement constat\u00e9 qu\u2019il y avait un \u00e9norme manque d\u2019informations m\u00e9dicales et de ressources consacr\u00e9es \u00e0 la prog\u00e9ria. Ils ont reconnu qu\u2019il n\u2019y avait aucun endroit o\u00f9 ces enfants pouvaient se rendre pour obtenir de l\u2019aide m\u00e9dicale, aucun endroit o\u00f9 les parents ou les m\u00e9decins pouvaient se tourner pour obtenir des informations, et aucune source de financement pour les chercheurs qui voulaient faire des recherches sur la prog\u00e9ria. Le manque d\u2019informations disponibles pour les familles, combin\u00e9 au manque de recherches et de possibilit\u00e9s de financement de la recherche, a incit\u00e9 la famille de Sam, ainsi que leurs amis et coll\u00e8gues, \u00e0 cr\u00e9er la Progeria Research Foundation, Inc. (\u00ab PRF \u00bb), la seule organisation \u00e0 but non lucratif au monde d\u00e9di\u00e9e \u00e0 la recherche sur la prog\u00e9ria.<\/p>\n

Sam est d\u00e9c\u00e9d\u00e9 le 10 janvier 2014, laissant derri\u00e8re lui un h\u00e9ritage d\u2019inspiration qui pousse aujourd\u2019hui le PRF et ses partisans \u00e0 poursuivre la qu\u00eate d\u2019un rem\u00e8de, avec plus de d\u00e9termination que jamais.<\/p>\n<\/div>\n<\/div>\n

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En collaboration avec des membres du conseil d'administration d\u00e9vou\u00e9s et attentionn\u00e9s et d'autres b\u00e9n\u00e9voles g\u00e9n\u00e9reux, la Fondation de recherche sur la prog\u00e9ria a \u00e9t\u00e9 cr\u00e9\u00e9e pour sensibiliser, \u00e9duquer et aider les familles, leurs m\u00e9decins, les chercheurs et le grand public au sujet du syndrome de Hutchinson-Gilford-Progeria. En outre, la PRF finance la recherche m\u00e9dicale et g\u00e8re des programmes li\u00e9s \u00e0 la recherche visant sp\u00e9cifiquement \u00e0 trouver la cause*, les traitements et le rem\u00e8de \u00e0 ce syndrome.<\/p>\n

D\u00e8s sa cr\u00e9ation, PRF a b\u00e9n\u00e9fici\u00e9 du leadership de l'avocate Audrey Gordon, la tante de Sam, qui occupe le poste de pr\u00e9sidente et de directrice g\u00e9n\u00e9rale de l'organisation; de Leslie Gordon, directrice m\u00e9dicale, et du Dr Scott Berns, pr\u00e9sident du conseil d'administration.<\/p>\n

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Saviez-vous?<\/b><\/h1>\n

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\u00c0 l\u2019exception de notre personnel, tous les membres de la PRF sont des b\u00e9n\u00e9voles ! Notre conseil d\u2019administration, notre secr\u00e9taire, notre tr\u00e9sorier, nos membres de comit\u00e9, nos traducteurs, nos collecteurs de fonds, etc. consacrent tous leur temps, leur \u00e9nergie et leurs talents \u00e0 la r\u00e9alisation de notre mission sans \u00eatre r\u00e9mun\u00e9r\u00e9s. Par cons\u00e9quent, nos frais administratifs sont tr\u00e8s bas. Cela laisse plus d\u2019argent \u00e0 consacrer \u00e0 la recherche m\u00e9dicale et \u00e0 la sensibilisation du public, ce qui m\u00e8nera finalement \u00e0 la d\u00e9couverte d\u2019un rem\u00e8de contre la prog\u00e9ria.<\/p>\n

Leslie B. Gordon, MD, PhD, est la directrice m\u00e9dicale du PRF. Elle est \u00e9galement chercheuse principale des programmes de recherche du PRF : le registre international du PRF, la banque de cellules et de tissus, la base de donn\u00e9es m\u00e9dicale et de recherche et le programme de tests diagnostiques, et co-auteur de la d\u00e9couverte historique du g\u00e8ne de la prog\u00e9ria et du traitement*.<\/p>\n

* Gr\u00e2ce aux efforts du PRF, en avril 2003, le PRF et les National Institutes of Health ont annonc\u00e9 que\u00a0<\/span>la cause de la prog\u00e9ria, une mutation du g\u00e8ne LMNA, a \u00e9t\u00e9 trouv\u00e9e<\/a>, et en septembre 2012,\u00a0<\/span>le tout premier traitement a \u00e9t\u00e9 d\u00e9couvert.<\/a><\/p>\n

Il y a beaucoup de travail \u00e0 faire et peu de ressources pour le faire. Nous ne pouvons pas y parvenir seuls. Avec votre soutien, le rem\u00e8de sera d\u00e9couvert pour ces merveilleux enfants.<\/p>\n

<\/em><\/h3>\n

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<\/em><\/h3>\n

Ensemble, nous VOLONT\u00c9<\/em> Trouvez le rem\u00e8de !<\/h3>\n

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S'inscrire<\/h2>\n

pour notre<\/h2>\n

Mises \u00e0 jour\u00a0!<\/h2>\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=\u201dFaites un don maintenant\u201d admin_label=\u201dEnsemble, nous trouverons le rem\u00e8de !\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 bouton_bg_color__hover=\u201d#8fd2ed\u201d bouton_border_color__hover_enabled=\u201don\u201d]<\/p>\n

Ensemble, nous<\/h2>\n

VOLONT\u00c9<\/em><\/h2>\n

trouve le rem\u00e8de !<\/h2>\n

[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png\u201d title_text=\u201dBande 2025 pour pied de page de site web sans ann\u00e9es\u201d _builder_version=\u201d4.27.4\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":"

Notre histoire a commenc\u00e9 lorsque le Dr Leslie Gordon et le Dr Scott Berns ont appris que leur fils Sam avait \u00e9t\u00e9 diagnostiqu\u00e9 avec la prog\u00e9ria. C'est ainsi que des amis et des membres de la famille se sont r\u00e9unis et ont cr\u00e9\u00e9 la seule association \u00e0 but non lucratif d\u00e9di\u00e9e \u00e0 la recherche sur la prog\u00e9ria.<\/p>","protected":false},"author":1,"featured_media":12071,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-355","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nOur Story | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"Our story began when Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam was diagnosed with Progeria. 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