![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Sam-new.jpg\")
In the summer of 1998, Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam, who was then 22 months old, had been diagnosed with Hutchinson-Gilford Progeria Syndrome (\u201cProgeria\u201d), commonly referred to as a \u201crapid-aging\u201d syndrome. It quickly became apparent to Sam\u2019s parents that there was an enormous lack of medical information and resources dedicated to Progeria. They recognized that there was no place for these children to go for medical help, no place for parents or doctors to turn for information, and no source of funding for researchers who wanted to do Progeria research. The lack of information available to families, combined with the lack of research and research-funding opportunities inspired Sam\u2019s family, together with their friends and colleagues, to launch The Progeria Research Foundation, Inc. (\u201cPRF\u201d), the only non-profit organization in the world dedicated to Progeria research.<\/p>\n
Sam passed away on January 10, 2014, leaving a legacy of inspiration that now drives PRF and its supporters to continue the quest for a cure, with tremendous determination, passion and, most of all, love.<\/p>\n<\/div>\n<\/div>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.progeriaresearch.org\/meet-the-kids” button_text=”Learn More About Sam’s Story” button_alignment=”center” _builder_version=”4.16″ background_layout=”dark” custom_margin=”35px||” global_colors_info=”{}”]<\/p>\n
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In the summer of 1998, Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam, who was then 22 months old, had been diagnosed with Hutchinson-Gilford Progeria Syndrome (\u201cProgeria\u201d), commonly referred to as a \u201cpremature aging\u201d syndrome. It quickly became apparent to Sam\u2019s parents that there was an enormous lack of medical information and resources dedicated to Progeria. They recognized that there was no place for these children to go for medical help, no place for parents or doctors to turn for information, and no source of funding for researchers who wanted to do Progeria research. The lack of information available to families, combined with the lack of research and research-funding opportunities inspired Sam\u2019s family, together with their friends and colleagues, to launch The Progeria Research Foundation, Inc. (\u201cPRF\u201d), the only non-profit organization in the world dedicated to Progeria research.<\/p>\n
Sam passed away on January 10, 2014, leaving a legacy of inspiration that now drives PRF and its supporters to continue the quest for a cure, with more determination than ever.<\/p>\n<\/div>\n<\/div>\n
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Together with caring, dedicated board members and other generous volunteers, The Progeria Research Foundation was created to raise awareness, educate and help the families, their doctors, researchers and the general public about Hutchinson-Gilford Progeria Syndrome. In addition, PRF funds medical research and runs research-related programs specifically aimed at finding the cause*, treatments, and cure for this syndrome.<\/p>\n
From its inception, PRF benefited from the leadership of Attorney Audrey Gordon, Sam\u2019s aunt, who serves as the organization\u2019s President and Executive Director; Leslie Gordon, Medical Director, and Dr. Scott Berns, Chairman of the Board of Directors.<\/p>\n
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Did You Know?<\/b><\/h1>\n
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With the exception of our staff, everyone involved with PRF is a volunteer! Our Board of Directors, Clerk, Treasurer, committee members, translators, fund-raisers, etc. all devote their time, energy and talents to furthering our mission without pay. As a result, our administrative costs are very low. This leaves more money to devote to medical research and raising public awareness, which ultimately lead to finding a cure for Progeria.<\/p>\n
Leslie B. Gordon, MD, PhD, is PRF\u2019s Medical Director. She is also the Principal Investigator of PRF\u2019s research-related programs: The PRF International Registry, Cell & Tissue Bank, Medical & Research Database, and Diagnostics Testing Program, and co-author on the historic Progeria gene finding and treatment discovery*.<\/p>\n
* Thanks to PRF\u2019s efforts, in April 2003 PRF and the National Institutes of Health announced that\u00a0<\/span>the cause of Progeria, a mutation in the LMNA gene, was found<\/a>, and in September 2012,\u00a0<\/span>the first-ever treatment was discovered.<\/a><\/p>\n There is much work to be done and little resources with which to do so. We cannot do it alone. With your support, the cure will be discovered for these wonderful children.<\/p>\n [\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=”1_2″ saved_specialty_column_type=”3_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/1.-Progeria-FAQs-square.jpg” align=”center” align_tablet=”center” align_phone=”” align_last_edited=”on|desktop” _builder_version=”4.16″ global_colors_info=”{}”]<\/p>\n [\/et_pb_image][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ module_class=”footer” _builder_version=”4.21.0″ background_color=”#29327a” custom_margin=”-2px|||||” custom_padding=”0|0px|0|0px|false|false” z_index_tablet=”500″ border_width_top=”12px” border_color_top=”#00b2e2″ global_module=”133″ locked=”off” global_colors_info=”{}”][et_pb_row column_structure=”1_4,1_4,1_2″ make_equal=”on” module_class=” et_pb_row_fullwidth” _builder_version=”4.16″ width=”89%” width_tablet=”80%” width_phone=”” width_last_edited=”on|desktop” max_width=”89%” max_width_tablet=”80%” max_width_phone=”” max_width_last_edited=”on|desktop” z_index_tablet=”500″ make_fullwidth=”on” width_unit=”off” custom_width_percent=”100%” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_cta button_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” button_text=”Sign Up Now” admin_label=”Sign Up for Updates” module_class=”sign-btn” _builder_version=”4.27.4″ header_font_size=”25px” background_color=”#29327a” animation_style=”slide” animation_direction=”left” animation_intensity_slide=”25%” link_option_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” header_font_size_tablet=”” header_font_size_phone=”30px” header_font_size_last_edited=”on|desktop” z_index_tablet=”500″ border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}” button_bg_color__hover_enabled=”on” button_bg_color__hover=”#8fd2ed” button_border_color__hover_enabled=”on”]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_cta button_url=”https:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR” button_text=”Donate Now” admin_label=”Together, we will find the cure!” module_class=”sign-btn” _builder_version=”4.16″ header_font_size=”25px” background_color=”#29327a” animation_style=”slide” animation_direction=”left” animation_intensity_slide=”25%” header_font_size_tablet=”” header_font_size_phone=”30px” header_font_size_last_edited=”on|desktop” body_font_size_tablet=”” body_font_size_phone=”” body_font_size_last_edited=”on|desktop” z_index_tablet=”500″ border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}” button_bg_color__hover_enabled=”on” button_bg_color__hover=”#8fd2ed” button_border_color__hover_enabled=”on”]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png” title_text=”2025 strip for website footer no years” _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”35px||||false|false” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" Ons verhaal begon toen Dr. Leslie Gordon en Dr. Scott Berns erachter kwamen dat hun zoon Sam de diagnose Progeria had gekregen. Vrienden en familie kwamen bij elkaar en richtten de enige non-profitorganisatie op die zich toelegde op Progeria-onderzoek.<\/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":"\n<\/em><\/h3>\n
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