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<!DOCTYPE html> <html lang="en-US"> <head> <meta charset="UTF-8" /> <meta http-equiv="X-UA-Compatible" content="IE=edge"> <link rel="pingback" href="https://www.progeriaresearch.org/xmlrpc.php" /> <script type="text/javascript"> document.documentElement.className = 'js'; </script> <link rel="preconnect" href="https://fonts.gstatic.com" crossorigin /><style id="et-builder-googlefonts-cached-inline">/* Original: https://fonts.googleapis.com/css?family=Nunito+Sans:200,200italic,300,300italic,regular,italic,600,600italic,700,700italic,800,800italic,900,900italic|Lato:100,100italic,300,300italic,regular,italic,700,700italic,900,900italic&subset=latin,latin-ext&display=swap *//* User Agent: Mozilla/5.0 (Unknown; Linux x86_64) AppleWebKit/538.1 (KHTML, like Gecko) Safari/538.1 Daum/4.1 */@font-face {font-family: 'Lato';font-style: italic;font-weight: 100;font-display: swap;src: url(https://fonts.gstatic.com/s/lato/v24/S6u-w4BMUTPHjxsIPx-mPCc.ttf) format('truetype');}@font-face {font-family: 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id="et_mobile_nav_menu"> <div class="mobile_nav closed"> <span class="select_page">Select Page</span> <span class="mobile_menu_bar mobile_menu_bar_toggle"></span> </div> </div> </div>  </div>  </header>  <div id="et-main-area"> <div id="main-content"> <article id="post-4746" class="post-4746 page type-page status-publish has-post-thumbnail hentry"> <div class="entry-content"> <div class="et-l et-l--post"> <div class="et_builder_inner_content et_pb_gutters3"> <div class="et_pb_with_border et_pb_section et_pb_section_0 et_pb_fullwidth_section et_section_regular" > <section class="et_pb_module et_pb_fullwidth_header et_pb_fullwidth_header_0 et_pb_text_align_left et_pb_bg_layout_dark"> <div class="et_pb_fullwidth_header_container left"> <div class="header-content-container center"> <div class="header-content"> <div class="et_pb_header_content_wrapper"><h1>Meet the Kids</h1> <h1>& Young Adults</h1></div> </div> </div> </div> <div class="et_pb_fullwidth_header_overlay"></div> <div class="et_pb_fullwidth_header_scroll"></div> </section> </div><div class="et_pb_with_border et_pb_section et_pb_section_1 handprint-bg et_pb_section_parallax et_pb_with_background et_section_specialty" > <span class="et_parallax_bg_wrap"><span class="et_parallax_bg et_pb_parallax_css" style="background-image: url(https://www.progeriaresearch.org/wp-content/uploads/2019/04/blue-handprint-only.png);" ></span></span> <div class="et_pb_row et_pb_gutters1"> <div class="et_pb_column et_pb_column_1_4 et_pb_column_0 sidebar-secondary-nav et_pb_css_mix_blend_mode_passthrough"> <div class="et_pb_with_border et_pb_module et_pb_sidebar_0 subpage-sidebars et_animated et_pb_widget_area clearfix et_pb_widget_area_left et_pb_bg_layout_light"> <div id="nav_menu-10" class="et_pb_widget widget_nav_menu"><div class="menu-meet-the-kids-menu-container"><ul id="menu-meet-the-kids-menu" class="menu"><li id="menu-item-5842" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4746 current_page_item menu-item-5842"><a href="https://www.progeriaresearch.org/meet-the-kids/" aria-current="page">Meet the Kids</a></li> <li id="menu-item-5874" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page menu-item-5874"><a href="https://www.progeriaresearch.org/spokespeople/">Spokespeople</a></li> <li id="menu-item-8695" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page menu-item-8695"><a href="https://www.progeriaresearch.org/find-the-children/">Find the Children</a></li> <li id="menu-item-5847" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page menu-item-5847"><a href="https://www.progeriaresearch.org/video-gallery/">Kids Video Gallery</a></li> <li id="menu-item-5848" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page menu-item-5848"><a href="https://www.progeriaresearch.org/in-memory-of/">In Memory Of</a></li> <li id="menu-item-11135" class="subpage-sidebar-menu menu-item menu-item-type-post_type menu-item-object-page menu-item-11135"><a href="https://www.progeriaresearch.org/prf-family-quotes/">PRF Family Quotes</a></li> </ul></div></div> </div> </div><div class="et_pb_column et_pb_column_3_4 et_pb_column_1 et_pb_specialty_column et_pb_css_mix_blend_mode_passthrough et-last-child"> <div class="et_pb_row_inner et_pb_row_inner_0"> <div class="et_pb_column et_pb_column_4_4 et_pb_column_inner et_pb_column_inner_0 et-last-child"> <div class="et_pb_module et_pb_text et_pb_text_0 et_pb_text_align_left et_pb_bg_layout_light"> <div class="et_pb_text_inner"><h4>Welcome to our growing Progeria family</h4> <p>Below, we share with you a glimpse into some of the lives of of the children and young adults with Progeria across the globe. You’ll learn how smart, energetic, talented, and ambitious these kids and young adults are – all with hopes and dreams of a bright future. We hope their stories inspire you to support PRF, so those dreams can come true.</p> <p>As of September 2024, we know of 151 children and young adults with Hutchinson-Gilford Progeria Syndrome (HGPS), all with a progerin-producing mutation in the LMNA gene; and 80 people in the category of progeroid laminopathy (PL), who have mutations in the lamin pathway but do not produce progerin; in a total of 48 countries.</p> <p> </p></div> </div> </div> </div><div class="et_pb_row_inner et_pb_row_inner_1"> <div class="et_pb_column et_pb_column_3_8 et_pb_column_inner et_pb_column_inner_1"> <div class="et_pb_module et_pb_text et_pb_text_1 et_pb_text_align_left et_pb_bg_layout_light"> <div class="et_pb_text_inner"><h4>Life According to Sam</h4> <p>Below, get a small glimpse into the lives of some of the children featured in the HBO Documentary <strong><a href="https://www.progeriaresearch.org/life-according-to-sam/">Life According to Sam</a></strong>, and many more from around the world!</p></div> </div> </div><div class="et_pb_column et_pb_column_3_8 et_pb_column_inner et_pb_column_inner_2 et-last-child"> <div class="et_pb_module et_pb_video et_pb_video_0"> <div class="et_pb_video_box"><iframe title="PRF | Come with us, and help find the Cure. #CureProgeria" width="1080" height="608" src="https://www.youtube.com/embed/aOB3ltOeK9I?feature=oembed" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe></div> <div style="background-image:url(https://www.progeriaresearch.org/wp-content/uploads/2019/04/VideoThumbnail.png)" class="et_pb_video_overlay"><div class="et_pb_video_overlay_hover"><a href="#" class="et_pb_video_play"></a></div></div> </div> </div> </div><div class="et_pb_row_inner et_pb_row_inner_2"> <div class="et_pb_column et_pb_column_4_4 et_pb_column_inner et_pb_column_inner_3 et-last-child"> <div class="et_pb_module et_pb_image et_pb_image_0"> <span class="et_pb_image_wrap "><img fetchpriority="high" decoding="async" width="1280" height="776" src="https://www.progeriaresearch.org/wp-content/uploads/2024/09/92024mapfor-website.png" alt="" title="92024mapfor website" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/09/92024mapfor-website.png 1280w, https://www.progeriaresearch.org/wp-content/uploads/2024/09/92024mapfor-website-980x594.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/09/92024mapfor-website-480x291.png 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) 1280px, 100vw" class="wp-image-19282" /></span> </div> </div> </div><div class="et_pb_with_border et_pb_row_inner et_pb_row_inner_3"> <div class="et_pb_column et_pb_column_undefined et_pb_column_inner et_pb_column_inner_4 et-last-child"> <div class="et_pb_module et_pb_text et_pb_text_2 et_pb_text_align_left et_pb_bg_layout_light"> <div class="et_pb_text_inner"><p>Below, learn about the children featured in the HBO Documentary, <a href="https://www.progeriaresearch.org/life-according-to-sam/"><strong>Life According to Sam</strong> </a>(filmed from 2010-2012) – Sam, Devin, Megan, Sammy and Zoey. Then get a glimpse into the lives of some of the other children and young adults who keep us motivated every day.</p> <p> </p></div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_0 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img decoding="async" width="150" height="199" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Sam_Brochure-2010MTK.jpg" alt="Sam Berns" class="wp-image-659" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Sam Berns</h4> <div><p>Sam passed away on January 10, 2014. He was 17 years old. The film shows Sam at ages 13 – 15, and we are so grateful that this award-winning documentary will allow the world to know this extraordinary person and the legacy of love, hope and inspiration he gifted to the world. Sam enjoyed many things, including music, comic books, and watching his beloved Boston sports teams play. He attained the highest academic honors, was a percussion section leader in his high school band, and achieved the rank of Eagle Scout in the Boy Scouts of America.</p> <p>Sam spoke publicly starting at the age of 4 years, shortly after his parents founded The Progeria Research Foundation, including at two <a href="https://www.progeriaresearch.org/tedx-talks/" target="_blank" rel="noopener noreferrer">TEDx conferences</a>. Exactly a decade after delivering his October 2013 talk on his philosophy for a happy life, the talk surpassed <strong>100 million cross-channel views</strong>, between TED.com and <a href="https://www.youtube.com/watch?v=36m1o-tM05g">TEDx</a>, and daily tweets about how his talk has inspired people continue. Sam was interviewed on national television and radio programs, including ABC Primetime and NPR, impressing his audiences with his articulate, witty and intelligent demeanor. Through <a href="https://www.progeriaresearch.org/life-according-to-sam/">Life According to Sam</a> and his timeless TEDx talk, he continues to inspire all of us at PRF, as well as millions around the world.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_1 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img decoding="async" width="159" height="186" src="https://www.progeriaresearch.org/wp-content/uploads/2022/11/Devin.png" alt="Devin" class="wp-image-15872" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Devin</h4> <div><p>During the filming of <i>Life According to Sam</i>, Canada resident Devin Scullion was 14 years old. More than anything, Devin enjoyed flying, and anything to do with airplanes and the mechanics of how they worked. Devin was also a big football fan and loved cheering on the Hamilton Ticats. He had started taking lonafarnib through PRF’s clinical drug trial at age 11. Sadly, Devin passed away on January 22, 2017, at the age of 20. In his mother’s words, “Being part of the trial definitely helped to extend his life; without PRF, we wouldn’t have had him for as long as we did.”</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_2 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img decoding="async" width="782" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MeghanN2023.png" alt="Megan" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MeghanN2023.png 782w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MeghanN2023-235x300.png 235w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MeghanN2023-768x982.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MeghanN2023-480x614.png 480w" sizes="(max-width: 782px) 100vw, 782px" class="wp-image-19638" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Megan</h4> <div><p>During the filming of <em>Life According to Sam,</em> she was 10 years old. Megan is now 24 and thriving. She loves riding horses and enjoys crafting jewelry for all her friends.</p> <p>Megan was the first child to take the Zokinvy (lonafarnib) drug in June 2007 – it was an historic moment! When schedules allow, she comes to Boston for her trial treatments with her friend Merlin Waldron. The two have been together in Boston for most of their trial visits. Megan and her family want you to know that they have complete faith and trust in all of the researchers and doctors and of course PRF: <em>“But those who hope in the Lord will receive their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31</em></p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_3 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="525" height="700" src="https://www.progeriaresearch.org/wp-content/uploads/2019/11/Sammy-for-website.jpg" alt="Sammy Basso" srcset="https://www.progeriaresearch.org/wp-content/uploads/2019/11/Sammy-for-website.jpg 525w, https://www.progeriaresearch.org/wp-content/uploads/2019/11/Sammy-for-website-480x640.jpg 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 525px, 100vw" class="wp-image-8995" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Sammy Basso</h4> <div><p>The oldest known person with classic Progeria, Italian resident Sammy Basso passed away in October 2024 at 28 years old. Sammy was known and adored throughout the world as a spokesperson for PRF and the Progeria community. He and his friends loved to create projects that would impact society in a positive way, like helping people in need or spreading awareness for great causes (check out their work with <a href="https://www.facebook.com/sammyrunsbrenta/videos/2395154744030051/?v=2395154744030051" target="_blank" rel="noopener">Sammy Runs Brenta</a>, for example!) In 2014, Sammy was featured in an Italian National Geographic Series, <em>Il Viaggio Di Sammy</em>, which chronicled his dream trip: traveling on Route 66 in the U.S. from Chicago to Los Angeles with his parents, Laura and Amerigo, and friend Riccardo. Sammy’s parents founded the <a href="https://www.facebook.com/groups/40213564765/#_=_">Associazione Italiana Progeria Sammy Basso</a> to raise awareness, fund research and provide support services to Italian families impacted by Progeria.</p> <p>In 2018, Sammy graduated from Padua University with a degree in Natural Sciences and delivered a thesis on a genetic editing approach in HGPS mice. Later that year, he was awarded Knight of the Order of Merit of the Italian Republic, for his in-depth research in disabilities and his partnership with the Italian government. In 2020, Sammy became a member of the Veneto’s regional and national task force for COVID-19 information disclosure (scientific and influencer features). In 2021, Sammy graduated with a second degree in Molecular Biology with a thesis on the intersection of Lamin A and Interleukin-6, an approach for treating Progeria by targeting the toxic protein, known as progerin. <u></u><u></u><u></u><u></u>Hear from Sammy in a panel at the 2021 STAT Breakthrough Science Summit <a href="https://www.youtube.com/watch?v=HP8rbSm2gv0&t=2s" target="_blank" rel="noopener" data-saferedirecturl="https://www.google.com/url?q=https://www.youtube.com/watch?v%3DHP8rbSm2gv0%26t%3D2s&source=gmail&ust=1630071558752000&usg=AFQjCNExV968PKWOQ2PeCFNcRJvem3E2Eg">here</a>.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_4 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="600" height="600" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/ZoeyMTK.png" alt="Zoey" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/ZoeyMTK.png 600w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/ZoeyMTK-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/ZoeyMTK-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/ZoeyMTK-480x480.png 480w" sizes="(max-width: 600px) 100vw, 600px" class="wp-image-19633" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Zoey</h4> <div><p>During filming of <em>Life According to Sam</em>, she was about a year old and now she is 15! She loves school and has lots of friends! Zoey loves to draw, write, be silly, be with her best friends, help her mom cook, and she especially loves gymnastics class!</p> <p>Zoey also adores music, singing, and dancing. She has two older brothers, Aidan and Gavin. They behave like typical siblings – they play together a lot but sometimes argue for no reason.</p> <p>In July 2013 Zoey began taking lonafarnib as part of the <a href="https://www.progeriaresearch.org/clinical-trials/" target="_blank" rel="noopener noreferrer">Trial Expansion</a>, and in April 2016, she and her friend Carly were the first to enroll in the new, <a href="https://www.progeriaresearch.org/clinical-trials/" target="_blank" rel="noopener noreferrer">2-drug trial</a>. For many years, her family has led PRF’s New Jersey Chapter, “Team Zoey,” which provides vital funds toward researching additional treatments and the cure. Follow Zoey on <a href="https://www.instagram.com/team_zoey/">Instagram</a> and <a href="https://twitter.com/SupportTeamZoey" target="_blank" rel="noopener noreferrer">Twitter</a>!</p></div> </div> </div><div class="et_pb_with_border et_pb_module et_pb_team_member et_pb_team_member_5 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="960" height="958" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023.jpeg" alt="Merlin Waldron" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023.jpeg 960w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023-300x300.jpeg 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023-150x150.jpeg 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023-768x766.jpeg 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Merlin2023-480x479.jpeg 480w" sizes="(max-width: 960px) 100vw, 960px" class="wp-image-19630" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Merlin Waldron</h4> <div><p>Merlin is an accomplished cellist and violinist, worldwide travel enthusiast, published poet and author, and graduated from Emerson College in Massachusetts in 2022 (for a glimpse into their book success, click <a href="https://www.youtube.com/watch?v=agINH6jz3Ls&list=PLio7GaXoQ3Shz1IbzLF1GkugQiDI0fMwR&index=54" target="_blank" rel="noopener">here</a>). For many years, Merlin served as a spokesperson for The Progeria Research Foundation at events including the Annual PRF Road Race, PRF’s International Scientific Workshop and in a variety of media appearances.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_6 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1000" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK.png" alt="Alexandra" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK.png 1000w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK-980x980.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/AlexandraMTK-480x480.png 480w" sizes="(max-width: 1000px) 100vw, 1000px" class="wp-image-19632" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Alexandra</h4> <div><p>Alexandra is a happy 8-year-old girl who likes going to school, laughing, and playing with her classmates. She loves music and playing instruments, and she’s crazy for dancing! Even outside of dance school, Alexandra dances wherever she hears music – in the car, in the shops, in the supermarket… She also likes swimming and playing at the swimming pool, where people call her “little fish.” At home, she’s always role-playing as a teacher with all her dolls and babies. At night, before sleeping, she adores reading books with her parents and hearing stories of princesses. She has lots of wishes and dreams; one of them, meeting Minnie Mouse, came true several years ago when she went to EuroDisney (Minnie’s house in Europe) and met her in a private reception where they played, talked, danced, and hugged. Since Alexandra is the only case in Spain, and there were no foundations specific to Progeria in the country, Alexandra’s family decided to create their own – “<a href="https://www.asociacionprogeria.com">Asociación Progeria Alexandra Peraut</a>” – as a way to raise awareness and funds for Progeria research. Alexandra’s parents were challenged to finish the Challenge Madrid Triathlon (full relay) to raise awareness for Progeria and their <a href="https://www.asociacionprogeria.com">association</a> and to raise funds for research. Take a look at <a href="https://www.progeriaresearch.org/wp-content/uploads/2019/11/Alexandra-movie-clip.mp4">this video</a> of the family crossing the finish line, and check out their <a href="https://www.instagram.com/asociacionprogeria/">Instagram</a> and <a href="https://www.facebook.com/AsociacionProgeriaAlexandraPeraut/">Facebook</a> for more information!</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_7 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="800" height="800" src="https://www.progeriaresearch.org/wp-content/uploads/2024/08/Beandi2024.png" alt="Beandri" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/08/Beandi2024.png 800w, https://www.progeriaresearch.org/wp-content/uploads/2024/08/Beandi2024-480x480.png 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 800px, 100vw" class="wp-image-19221" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Beandri</h4> <div><p><span>Beandri is from South Africa and will be 19 years old in November 2024. She is one of four siblings, with three older brothers. Beandri loves Afrikaans music and to make people more aware of Progeria by going live on TikTok. She is known as BB on TikTok. She earned certificates in Child Daycare and Child Psychology and recently also completed her Life coach studies. She loves her dogs and Angel, her marmoset monkey. She is very positive, even though she underwent many surgeries. Her family has a Facebook page for her,</span>“<a href="https://www.facebook.com/groups/beandri/" target="_blank" rel="noopener noreferrer">Beandri, our Inspiration</a>.” <span> She is a big inspiration to all of us and keeps us positive with her outlook on life.</span></p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_8 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="247" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Brennen-in-field.jpg" alt="Brennen" class="wp-image-356" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Brennen</h4> <div><p>Brennen is a 15-year-old boy from New York. He is very active and loves his dog and his little brother, Owen. Brennen’s family and friends started TEAM BRENNEN to help raise funds and awareness for Progeria, and their small town in upstate NY has rallied around the family. In July 2014, Brennen had his first <a href="https://www.progeriaresearch.org/clinical-trials/">Progeria Clinical Trial</a> visit in Boston. His mom posted to Facebook how proud she was for the way Brennen handled all the testing! Keep up with this fun little boy and his great team on the <a href="https://www.facebook.com/TeamBrennen" target="_blank" rel="noopener noreferrer">Team Brennen Facebook page</a>.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_9 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1000" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk.png" alt="Enzo" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk.png 1000w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk-980x980.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Enzomtk-480x480.png 480w" sizes="(max-width: 1000px) 100vw, 1000px" class="wp-image-19631" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Enzo</h4> <div><p>Enzo is an adorable 13-year-old boy from Australia with a beautiful, contagious smile. Enzo loves to build with Legos and is very interested in learning all about the planets and space. He is a full-time student, where math, science, and art are his favorite subjects. He enjoys his time at school with his friends, where he is a popular kid! Enzo loves sports, but he is not strong enough to play with his peers. Instead, he enjoys weekly swimming and dancing lessons. He participates every year in the Glenelg Christmas Pageant and end-of-year concert with Dancers by Donna. He loves to be on the stage! His love for music is increasing each year, and he is planning to take guitar lessons soon. Also, Enzo loves running. He participates each year in the City-to-Bay Fun Run in Adelaide in the 6kms walking group. Watching him cross the finish line every year is priceless. Enzo has built up a community – ‘Team Enzo’ hosts many fundraising activities to support Enzo in his journey with Progeria.</p> <p>Enzo was one of the youngest children to enroll in PRF’s Clinical Trials, back in 2015. His first visit to Boston was in April of 2015 at age 3. Next, he came in September of 2017, and most recently in September of 2019. Enzo has enrolled in the one-drug trial to continue taking lonafarnib. As parents, Catherina and Percy have learned to live with the fear that anything can happen at any day or any time. On the other hand, having PRF in their lives has given them the hope that instead of enjoying Enzo for only 14 or 15 years, now they can strongly believe they will watch him finish high school, drive a car, and continue his studies. They are hopeful that a cure will be found in the years to come!</p> <p>See Enzo in motion and meet his family in this <a href="https://m.youtube.com/watch?v=QEUumIaxM9M" target="_blank" rel="noopener noreferrer">special video</a>, and stay in touch with them on <a href="https://www.facebook.com/TeamEnzoProgeria/">Facebook</a>. You can also support Team Enzo on their <a href="https://www.teamenzoprogeria.com/" target="_blank" rel="noopener noreferrer">fundraising page</a>.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_10 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1000" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024.png" alt="Kaylee" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024.png 1000w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024-980x980.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Kayleebeach2024-480x480.png 480w" sizes="(max-width: 1000px) 100vw, 1000px" class="wp-image-19640" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Kaylee</h4> <div><p>Kaylee is 21 years old and from Ohio. When she’s not studying to be a paralegal, she enjoys hanging out with friends, driving her van, and traveling. Her favorite trips so far have been Savannah, GA, and Phoenix, AZ. Kaylee is an online influencer, local celebrity, and a very busy girl. She was invited to speak at Total Package Girl Leadership Summit in October 2019. Keep up with Kaylee by joining her <a href="https://www.facebook.com/groups/111892979356/" target="_blank" rel="noopener noreferrer">Facebook Group!</a></p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_11 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1242" height="1242" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024.jpeg" alt="Lindsay" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024.jpeg 1242w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-300x300.jpeg 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-1024x1024.jpeg 1024w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-150x150.jpeg 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-768x768.jpeg 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-1080x1080.jpeg 1080w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-980x980.jpeg 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/LindsayR2024-480x480.jpeg 480w" sizes="(max-width: 1242px) 100vw, 1242px" class="wp-image-19641" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Lindsay</h4> <div><p>Lindsay is a down-to-earth, light-hearted 20-year-old woman from Michigan, who was featured with Hayley and Kaylee on the 2010 Barbara Walters 20/20 Special <a href="https://abcnews.go.com/Health/barbara-walters-special-70-resources-progeria-information/story?id=14185425" target="_blank" rel="noopener noreferrer" data-saferedirecturl="https://www.google.com/url?q=https://abcnews.go.com/Health/barbara-walters-special-70-resources-progeria-information/story?id%3D14185425&source=gmail&ust=1599057849436000&usg=AFQjCNFL6t163_Ywh2h6I2JJtLANUELn-Q">‘7 Going on 70’</a>. Nowadays, she’s crushing it at Albion College!! In May 2024, she received recognition for having one of the highest GPAs among the Class of 2026! Lindsay enjoys hanging out with her friends when she’s not studying, listening to music, reading, writing, or drawing.</p> <p>As a freshman at the Challenging Borders International Human Rights Conference at Albion College in April 2023, she presented on the different policies in sanctuary counties in the U.S., interacting with people from 9 countries and 18 universities. It was truly a cultural experience!!</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_12 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="900" height="900" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK.png" alt="Mateo" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK.png 900w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MateoMTK-480x480.png 480w" sizes="(max-width: 900px) 100vw, 900px" class="wp-image-19642" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Mateo</h4> <div><p>Mateo is 22 years old and from a large city in Argentina. He started coming to Boston for the very first Progeria clinical trial, all the way back in 2007! He’s planning to pursue a career in computer engineering and loves technology; he’s always on his cell phone, skimming the web and playing his favorite game, “Free Fire.” He also likes to play poker and chess.</p> <p>He doesn’t like to miss weekends with his favorite cousins, Enzo and Agustin (twins), and the group of friends they have in common. Mateo is very loved by all his friends, and by many people in his network who support him on his journey.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_13 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1000" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK.png" alt="Michiel & Amber" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK.png 1000w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK-980x980.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/MichielAmberMTK-480x480.png 480w" sizes="(max-width: 1000px) 100vw, 1000px" class="wp-image-19643" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Michiel & Amber</h4> <div><p>Meet Michiel, 26, who loves snowboarding and kart racing, computer games, hanging with his friends, and “The Big Bang Theory”. His 18-year-old sister, Amber, loves to horse around with Michiel, and loves gymnastics, dancing, the color green and and her mobile phone. Read about these very close siblings from Belgium on their <a href="https://www.progeria.be/?lang=en">multi-lingual site</a> created with love by their parents. Learn through the detailed diary about their experiences living with Progeria, and the life of this wonderful boy and girl who bring so much joy to all who know them. You can also stay in touch with them on <a href="https://www.facebook.com/pages/Ik-ben-michiel/204907719690404">Michiel’s Facebook page </a>or on <a href="https://www.instagram.com/amber.vandeweert/">Amber’s Instagram page</a>.</p> <p>We learned a lot about Michiel and Amber through our first game of “<a href="https://www.youtube.com/watch?v=WerLe5ApRwc" target="_blank" rel="noopener noreferrer">Sibling Showdown</a>”. They did not agree on much, but it was clear that Amber keeps the tidier bedroom and that both siblings dream of travel. The family chose Cambridgeside Galleria Mall for the location of the shoot, which made sense after hearing that one of Amber’s favorite activities is shopping! For a closer look into the lives of Michiel and Amber, check out the <a href="https://www.progeriaresearch.org/wp-content/uploads/2019/09/2019-Newletter-For-Web.pdf">2019 PRF newsletter</a>, featuring a brief interview with the sibling duo.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_14 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="1000" height="1000" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK.png" alt="Nathan & Bennett" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK.png 1000w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK-768x768.png 768w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK-980x980.png 980w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/NathanBennettMTK-480x480.png 480w" sizes="(max-width: 1000px) 100vw, 1000px" class="wp-image-19644" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Nathan & Bennett</h4> <div><p>Nathan and Bennett are brothers with Progeria who live outside of Philadelphia, PA with their parents, older sister Libby, and dog Ruby. They both have a rare form of Progeria called Mandibuloacral Dysplasia (MAD) and have similar medical conditions to children with classic Progeria. Nathan is 19 and Bennett is 15. Nathan is very cautious, responsible and academically minded. He plays violin, trumpet and loves anything science-related. Bennett is more ‘carefree’ and gets away with a lot because of his charming smile and goofy personality. He loves anything sports-related and plays football for hours outside, regardless of the weather! Both are obsessed with Star Wars, Minecraft and of course, their electronic devices! Despite the differences in their ages and personalities, these two are best friends! See their beautiful brotherhood/friendship and meet their family in this <a href="https://www.facebook.com/specialbooksbyspecialkids/videos/1140314192737226/">heartwarming interview</a> by <em>Special Books for Special Kids</em>. For more information on this dynamic duo, please visit their <a href="https://www.facebook.com/pg/nathanandbennett/about/?ref=page_internal">Facebook Page</a>.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_15 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="640" height="640" src="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Zein.png" alt="Zein" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/11/Zein.png 640w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Zein-300x300.png 300w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Zein-150x150.png 150w, https://www.progeriaresearch.org/wp-content/uploads/2024/11/Zein-480x480.png 480w" sizes="(max-width: 640px) 100vw, 640px" class="wp-image-19629" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Zein</h4> <div><p>Zein is the only child in Egypt identified by name and genetically tested for Progeria. He is 7 years old and is a part of PRF’s monotherapy trial. In September of 2019, his trip to Boston for the trial was the first time he left Egypt! Zein likes to spend time with his family, to read books with his older brother, Adam, and to sing and dance. Everyone loves Zein when they meet him, because he is so sweet and friendly. He brings joy to all of his family and friends. His mother Dina mentions, she is “so proud to have a child like him.” Get to know more about him <a href="https://www.youtube.com/watch?v=fLySH7FqPq4">here</a>.</p></div> </div> </div> </div> </div><div class="et_pb_with_border et_pb_row_inner et_pb_row_inner_4"> <div class="et_pb_column et_pb_column_undefined et_pb_column_inner et_pb_column_inner_5 et-last-child"> <div class="et_pb_module et_pb_text et_pb_text_3 et_pb_text_align_left et_pb_bg_layout_light"> <div class="et_pb_text_inner"><h3>In Loving Memory…</h3> <p>You may have read about these special children and young adults – each of whom has made a very big impact in a very unique way…</p></div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_16 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="203" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Adalia-with-butterflyMTK.jpg" alt="Adalia Rose" class="wp-image-354" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Adalia Rose</h4> <div><p>Adalia, a teenager from Texas with a <a href="https://www.youtube.com/@AdaliaRoseBudd">personality the size of Texas</a> too, passed away in January 2022 at the age of 15 years old. She loved to sing, dance and play dress up. She was widely known for her fun videos and special relationship with her mom, Natalia – her <a href="https://www.facebook.com/AdaliaRose">12 million Facebook followers</a> are proof of that!</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_17 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="193" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Cam-with-art-project.jpg" alt="Cameron" class="wp-image-662" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Cameron</h4> <div><p>Cam was a big sports fan. If he wasn’t playing sports, he enjoyed watching His favorite sports teams; the Pittsburgh Penguins and the Steelers. His favorite foods included chocolate ice cream and pasta. His favorite color was blue and he enjoyed math and video games. Cam was 16 years old when he passed in 2023.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_18 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="225" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Carly_Heart_2016.jpg" alt="Carly" class="wp-image-2501" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Carly</h4> <div><p>Carly-Q, as she was affectionately called by friends and family, was an adorable, unstoppable bundle of energy! Carly enjoyed DIY projects, making slime and caring for her numerous baby dolls. She also loved watching and creating <a href="https://www.youtube.com/user/TeamCarlyQ">YouTube videos</a>.</p> <p>In 2012, Carly Cares, a 501(c)3 non-profit organization was founded to support progeria families and researchers. </p> <p>Carly loved dancing, school, and especially math. In July 2013, Carly joined the Progeria Drug Trial, coming to Boston to enroll with her friend Zoey and in April 2016, they were the first to enroll in the new, 2-drug trial. <a href="https://www.youtube.com/watch?v=reh9GvH9Jis" target="_blank" rel="noopener noreferrer">Click Here</a> to watch a short video of her with Zoey in Boston. Check out Carly-Q’s Mom on <a href="https://www.facebook.com/CarlyQsMom" target="_blank" rel="noopener noreferrer">Facebook</a>.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_19 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="131" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/claudia-with-frame.jpg" alt="Claudia" class="wp-image-663" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Claudia</h4> <div><p>Claudia from Portugal was 23 years old at the time of her passing in November of 2021. Her favorite color was blue, favorite school subject was Foreign Languages, and her favorite food was “Punched” baked potatoes with salted cod (in Portuguese, it is “Batata á murro com Bacalhau”). She also loved music, dancing, and going out with friends. You can check out her Facebook page <a href="https://www.facebook.com/claudia_amaral98-115697513133971/">here.</a></p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_20 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="182" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/hayley-blue-MTK.jpg" alt="Hayley" class="wp-image-665" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Hayley</h4> <div><p>Hayley, a teenager from England with Progeria who captured the hearts of many, passed away in April, 2015 at the age of 17. Hayley won the prestigious <em>Children of Courage Award</em> and appeared in several documentaries and stories about Progeria. You can get to know Hayley by reading her books, <a href="https://www.amazon.com/Old-Before-My-Time-Progeria-ebook/dp/B0873943LH/ref=sr_1_1?dchild=1&keywords=old+before+my+time&qid=1596217460&sr=8-1" target="_blank" rel="noopener noreferrer">Old Before My Time</a>, and <a href="https://www.amazon.com/Young-Heart-likes-teenager-Progeria-ebook/dp/B084FXDTH4/ref=sr_1_1?dchild=1&keywords=young+at+heart+hayley+okines&qid=1596217512&s=digital-text&sr=1-1" target="_blank" rel="noopener noreferrer">Young at Heart</a>, about living with Progeria. In her words, “my life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.” What an inspiration! </p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_21 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="371" height="475" src="https://www.progeriaresearch.org/wp-content/uploads/2019/11/Jomar-for-website-1.png" alt="Jomar" srcset="https://www.progeriaresearch.org/wp-content/uploads/2019/11/Jomar-for-website-1.png 371w, https://www.progeriaresearch.org/wp-content/uploads/2019/11/Jomar-for-website-1-234x300.png 234w" sizes="(max-width: 371px) 100vw, 371px" class="wp-image-8998" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Jomar</h4> <div><p>Jomar was full of life! He loved to dance and sing. His favorite song to sing was “Vamos a la Playa”! Jomar loved animals and visiting the zoo and aquarium. His favorite shows included Paw Patrol and Spiderman. Jomar was 13 when he passed in 2023.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_22 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="132" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/josiah-on-first-baseMTK.jpg" alt="Josiah" class="wp-image-363" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Josiah</h4> <div><p>Josiah, quite the character whose love of baseball had captured the attention of sports fans everywhere, passed away on December 24, 2018 at age 14. Josiah was featured in 2010 and 2017 on ESPN’s E:60, and has inspired many with his courage, including his very favorite player, Ryan Howard of the Philadelphia Phillies. Chosen by ABC as a <a href="https://abcnews.go.com/US/Family/rare-disease-body-age-rapidly-stop-boy-playing/story?id=14029162" target="_blank" rel="noopener noreferrer" data-saferedirecturl="https://www.google.com/url?q=https://abcnews.go.com/US/Family/rare-disease-body-age-rapidly-stop-boy-playing/story?id%3D14029162&source=gmail&ust=1547646489488000&usg=AFQjCNGHOV9V6FQb7HKDHNtUe4TjxSjTJw">“Person of the Week” </a>in 2011, Josiah affected people because, as his mom Jennifer says, “He didn’t let his condition stop him. He was placed here to touch people’s lives.” Josiah served as <a href="https://www.centredaily.com/sports/article171690452.html" target="_blank" rel="noopener noreferrer" data-saferedirecturl="https://www.google.com/url?q=https://www.centredaily.com/sports/article171690452.html&source=gmail&ust=1547646489488000&usg=AFQjCNFzpw4D1uPJ4i0w-8uTzr9OhNTezw">Honorary Bench Coach for the State College Spikes</a> (A – Cardinals) baseball team, earning the 2015 Mitauer “Good Guy” Award for his contribution to their championship season and for being a generous, courageous and passionate human being away from the field. <a href="https://www.youtube.com/watch?v=-ZQ1Yb7QdDo" target="_blank" rel="noopener noreferrer" data-saferedirecturl="https://www.google.com/url?q=https://www.youtube.com/watch?v%3D-ZQ1Yb7QdDo&source=gmail&ust=1547646489488000&usg=AFQjCNFUQ72_AlP4m56j9ykppl-ujIC3FQ">This heartwarming video</a> shows how close the team came to their inspirational bench coach during the 2014 season.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_23 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="150" height="158" src="https://www.progeriaresearch.org/wp-content/uploads/2016/10/Nihal-with-Lamborghini-Feb-2015.jpg" alt="Nihal" class="wp-image-373" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Nihal</h4> <div><p>Nihal from Mumbai, India, passed away in 2016 at the age of 15. Nihal was a big science fan who loved to paint. You can see some of his wonderful artwork on his Facebook page, <a href="https://www.facebook.com/TeamNihal" target="_blank" rel="noopener noreferrer">TEAM NIHAL</a> and on his <a href="https://twitter.com/TeamNihal" target="_blank" rel="noopener noreferrer">Twitter</a>, both still active by his Dad, Srinivas. One of Nihal’s greatest dreams was to ride in a Lamborghini-a dream that came true early in 2015 at Lamborghini Mumbai, who surprised Nihal for his 14th birthday. Nihal was a pivotal figure in the campaign <a href="https://twitter.com/hashtag/Finding60inIndia?src=hash" target="_blank" rel="noopener noreferrer">#Finding60inIndia</a>, part of PRF’s Find the Other 150 Campaign in partnership with India’s MediaMedic Communications. It is estimated there are 60 children in India who we are looking to identify and connect with so that they can get the unique help they need, including participation in the PRF-funded clinical drug trials. Watch this <a href="https://m.youtube.com/watch?v=JxWo4k5iJpU&feature=youtu.be" target="_blank" rel="noopener noreferrer">video featuring Nihal</a> for more information.</p></div> </div> </div><div class="et_pb_module et_pb_team_member et_pb_team_member_24 prf-person-module clearfix et_pb_bg_layout_light"> <div class="et_pb_team_member_image et-waypoint et_pb_animation_off"><img loading="lazy" decoding="async" width="589" height="735" src="https://www.progeriaresearch.org/wp-content/uploads/2024/09/Zach-age-17-USA.jpg" alt="Zach" srcset="https://www.progeriaresearch.org/wp-content/uploads/2024/09/Zach-age-17-USA.jpg 589w, https://www.progeriaresearch.org/wp-content/uploads/2024/09/Zach-age-17-USA-480x599.jpg 480w" sizes="(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 589px, 100vw" class="wp-image-19307" /></div> <div class="et_pb_team_member_description"> <h4 class="et_pb_module_header">Zach</h4> <div><p style="font-weight: 400;"><span data-markjs="true">Zach</span> was 17 years old when he passed away in September, 2024. He lived in Lexington, Kentucky, loved the color yellow and was addicted to Minecraft videos. He also loved traveling, gaming, and listening to classic rock music. <span data-markjs="true">Zach</span> exceled in math, loved pizza, cheese bread, cheeseburgers and chicken fingers.</p> <p style="font-weight: 400;"><span data-markjs="true">Zach</span> and his parents were guests (with Carly Q) on The Katie Show in June of 2014. Katie Couric is a devoted supporter of children with Progeria. Katie made <span data-markjs="true">Zach</span>’s year by giving him the most awesome gift ever… tickets to his favorite rock band, Queen! <span data-markjs="true">Zach</span>’s parents hosted Progeria fundraisers yearly (<span data-markjs="true">Zach</span> Attack Ride for Progeria). His contagious energy, brilliant sense of humor and smile will live on forever.</p></div> </div> </div> </div> </div> </div> </div> </div><div class="et_pb_with_border et_pb_section et_pb_section_3 footer et_pb_with_background et_section_regular" > <div class="et_pb_row et_pb_row_0 et_pb_row_fullwidth et_pb_equal_columns"> <div class="et_pb_column et_pb_column_1_4 et_pb_column_2 et_pb_css_mix_blend_mode_passthrough"> <div class="et_pb_module et_pb_cta_0 sign-btn et_animated et_hover_enabled et_pb_promo et_pb_text_align_center et_pb_bg_layout_dark"> <div class="et_pb_promo_description"><div><h2>Sign Up</h2> <h2>for Our</h2> <h2>Newsletter!</h2></div></div> <div class="et_pb_button_wrapper"><a class="et_pb_button et_pb_promo_button" href="https://www.progeriaresearch.org/newsletter-signup/">Sign Up Now</a></div> </div> </div><div class="et_pb_column et_pb_column_1_4 et_pb_column_3 et_pb_css_mix_blend_mode_passthrough"> <div class="et_pb_module et_pb_cta_1 sign-btn et_animated 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