{"id":20127,"date":"2025-05-27T08:31:55","date_gmt":"2025-05-27T12:31:55","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?p=20127"},"modified":"2026-05-18T09:54:30","modified_gmt":"2026-05-18T13:54:30","slug":"rdd-2025-cimus","status":"publish","type":"post","link":"https:\/\/www.progeriaresearch.org\/ru\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"\u0421\u043e\u0443\u0447\u0440\u0435\u0434\u0438\u0442\u0435\u043b\u0438 PRF \u0434\u043e\u043a\u0442\u043e\u0440\u0430 \u041b\u0435\u0441\u043b\u0438 \u0413\u043e\u0440\u0434\u043e\u043d \u0438 \u0421\u043a\u043e\u0442\u0442 \u0411\u0435\u0440\u043d\u0441 \u0432\u044b\u0441\u0442\u0443\u043f\u0430\u044e\u0442 \u0432 \u043a\u0430\u0447\u0435\u0441\u0442\u0432\u0435 \u043b\u0438\u0434\u0435\u0440\u043e\u0432 \u043c\u043d\u0435\u043d\u0438\u0439 \u043d\u0430 \u043a\u043e\u043d\u0444\u0435\u0440\u0435\u043d\u0446\u0438\u0438 CiMUS \u0432 \u0418\u0441\u043f\u0430\u043d\u0438\u0438"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#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\/2025\/02\/20250129_Poster_Progeria_final.jpg&#8221; title_text=&#8221;20250129_Poster_Progeria_final&#8221; url=&#8221;https:\/\/www.charitynavigator.org\/ein\/043460220&#8243; align=&#8221;center&#8221; admin_label=&#8221;logos&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; width=&#8221;100%&#8221; max_width=&#8221;100%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font_size=&#8221;18px&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"elementToProof\">\n<p>The Center for Research in Molecular Medicine and Chronic Diseases (CiMUS) at the University of Santiago in Spain invited PRF co-founders to share their story at a special Rare Disease Day 2025 event.<\/p>\n<p>Organized and moderated by PRF researcher, Dr. Ricardo Villa-Bellosta, Drs. Gordon and Berns will shared the latest research advancements impacting the field of Progeria research and the journey of bringing Progeria from obscurity to gene finding, to treatment, to global awareness and a possible cure on the horizon! They were also joined by Esther Martinez Gracia, mother to Alexandra Perault and long-time friend and supporter of PRF.<\/p>\n<p>For more info on the event,<a href=\"https:\/\/cimus.usc.gal\/events\/rare-disease-day-progeria-1\"> click here<\/a>.<\/p>\n<p>The event inspired extensive media coverage, such as <a href=\"https:\/\/www.antena3.com\/noticias\/sociedad\/padres-alexandra-nina-enfermedad-rara-importante-rendirse-aprovechar-cada-momento_2025030267c4b1341ba31400010be3d8.html\">&#8220;<b>The parents of Alexandra, a girl with a rare disease: &#8220;The important thing is not to give up and to take advantage of every moment&#8221;<\/b><\/a><\/p>\n<\/div>\n<p>[\/et_pb_text][et_pb_testimonial quote_icon_color=&#8221;#FFFFFF&#8221; quote_icon_background_color=&#8221;#00B2E2&#8243; admin_label=&#8221;quote&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; body_font=&#8221;|700|||||||&#8221; body_font_size=&#8221;18px&#8221; background_color=&#8221;#8FD2ED&#8221; background_layout=&#8221;dark&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Following her diagnosis, the family looked for options to treat the disease, and that&#8217;s when they learned about The Progeria Research Foundation (PRF), an American organization dedicated to researching progeria. Through this foundation, Alexandra was able to enter a clinical trial testing a drug called lonafarnib that does not cure the disease, but has been shown to increase patients&#8217; life expectancy by 30%.<\/p>\n<p><i>~<\/i><span>Esther Mart\u00ednez Gracia, Mother of Alexandra and President of the Spanish Progeria Association<\/span><\/p>\n<p>[\/et_pb_testimonial][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/cimus-group-1024&#215;683.jpg&#8221; title_text=&#8221;cimus group&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;14px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>(From left): David Ara\u00fajo Vilar, CiMUS researcher and President-Founder of the Spanish Society of Lipodystrophies; Mabel Loza Garc\u00eda, CiMUS Scientific Director; PRF Co-Founder and Medical Director, Dr. Leslie Gordon; Gumersindo Feijoo Costa, Representative of the University of Santiago de Compostela, Vice-chancellor\u2019s office for Digital Transformation and Innovation; Carmen Cotelo Queijo, Representative of the Galician Government, Director of the Galician Innovation Agency; Esther Mart\u00ednez Gracia, Mother of Alexandra and President of the Spanish Progeria Association; PRF Co-Founder and Board Chair, Dr. Scott Berns; Ricardo Villa Bellosta, CiMUS researcher and PRF grantee<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u0426\u0435\u043d\u0442\u0440 \u0438\u0441\u0441\u043b\u0435\u0434\u043e\u0432\u0430\u043d\u0438\u0439 \u0432 \u043e\u0431\u043b\u0430\u0441\u0442\u0438 \u043c\u043e\u043b\u0435\u043a\u0443\u043b\u044f\u0440\u043d\u043e\u0439 \u043c\u0435\u0434\u0438\u0446\u0438\u043d\u044b \u0438 \u0445\u0440\u043e\u043d\u0438\u0447\u0435\u0441\u043a\u0438\u0445 \u0437\u0430\u0431\u043e\u043b\u0435\u0432\u0430\u043d\u0438\u0439 (CiMUS) \u043f\u0440\u0438 \u0423\u043d\u0438\u0432\u0435\u0440\u0441\u0438\u0442\u0435\u0442\u0435 \u0421\u0430\u043d\u0442\u044c\u044f\u0433\u043e \u0432 \u0418\u0441\u043f\u0430\u043d\u0438\u0438 \u043f\u0440\u0438\u0433\u043b\u0430\u0441\u0438\u043b \u0441\u043e\u0443\u0447\u0440\u0435\u0434\u0438\u0442\u0435\u043b\u0435\u0439 PRF \u043f\u043e\u0434\u0435\u043b\u0438\u0442\u044c\u0441\u044f \u0441\u0432\u043e\u0435\u0439 \u0438\u0441\u0442\u043e\u0440\u0438\u0435\u0439 \u043d\u0430 \u0441\u043f\u0435\u0446\u0438\u0430\u043b\u044c\u043d\u043e\u043c \u043c\u0435\u0440\u043e\u043f\u0440\u0438\u044f\u0442\u0438\u0438, \u043f\u043e\u0441\u0432\u044f\u0449\u0435\u043d\u043d\u043e\u043c \u0414\u043d\u044e \u0440\u0435\u0434\u043a\u0438\u0445 \u0437\u0430\u0431\u043e\u043b\u0435\u0432\u0430\u043d\u0438\u0439 2025 \u0433\u043e\u0434\u0430.<\/p>","protected":false},"author":2,"featured_media":20138,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[3,1],"tags":[],"class_list":["post-20127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - 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