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\n[\/et_pb_video][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.22.1″ _module_preset=”default” global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.22.1″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/March-2026-Map.jpg” title_text=”March 2026 Map” align=”center” admin_label=”Map” _builder_version=”4.27.5″ vertical_offset_tablet=”0″ horizontal_offset_tablet=”0″ width=”100%” module_alignment=”center” custom_margin=”0px|0px|0px||false|false” custom_padding=”|20px|||false|false” hover_enabled=”0″ z_index_tablet=”0″ box_shadow_horizontal_tablet=”0px” box_shadow_vertical_tablet=”0px” box_shadow_blur_tablet=”40px” box_shadow_spread_tablet=”0px” global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=”undefined” custom_padding_last_edited=”on|phone” _builder_version=”4.16″ custom_padding=”12px|35px|39.0156px|0px|false|false” custom_padding_tablet=”|35px||35px||true” custom_padding_phone=”” border_width_top=”10px” border_color_top=”#8fd2ed” global_colors_info=”{}”][et_pb_column_inner type=”undefined” saved_specialty_column_type=”3_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.24.3″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Below, learn about the children featured in the HBO Documentary, Life According to Sam<\/strong>\u00a0<\/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>\n <\/p>\n [\/et_pb_text][et_pb_team_member name=”Sam Berns” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sam_Brochure-2010MTK.jpg” admin_label=”Sam” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Sam passed away on January 10, 2014.\u00a0He was 17 years old. The film shows Sam at ages 13 \u2013 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>\n Sam spoke publicly starting at the age of 4 years, shortly after his parents founded The Progeria Research Foundation, including at two\u00a0TEDx conferences<\/a>. Exactly a decade after delivering his October 2013 talk on his philosophy for a happy life, the talk surpassed 100 million cross-channel views<\/strong>, between TED.com and 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 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>\n [\/et_pb_team_member][et_pb_team_member name=”Devin” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/11\/Devin.png” admin_label=”Devin” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n During the filming of 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\u2019s clinical drug trial at age 11. Sadly, Devin passed away on January 22, 2017, at the age of 20. In his mother\u2019s words, \u201cBeing part of the trial definitely helped to extend his life; without PRF, we wouldn\u2019t have had him for as long as we did.\u201d<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Megan” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MeghanN2023.png” admin_label=”Megan” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n During the filming of\u00a0Life 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>\n Megan was the first child to take the Zokinvy (lonafarnib) drug in June 2007 \u2013 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: \u201cBut 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.\u201d Isaiah 40:31<\/em><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Sammy Basso” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Sammy-for-website.jpg” admin_label=”Sammy” module_class=”prf-person-module” _builder_version=”4.27.2″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 Sammy Runs Brenta<\/a>, for example!)\u00a0 In 2014, Sammy was featured in an Italian National Geographic Series, 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\u2019s parents founded the Associazione Italiana Progeria Sammy Basso<\/a> to raise awareness, fund research and provide support services to Italian families impacted by Progeria.<\/p>\n 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\u2019s 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.\u00a0<\/u><\/u><\/u><\/u>Hear from Sammy in a panel at the 2021 STAT Breakthrough Science Summit\u00a0here<\/a>.\u200b<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Zoey” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/ZoeyMTK.png” admin_label=”Zoey” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n During filming of 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>\n Zoey also adores music, singing, and dancing. She has two older brothers, Aidan and Gavin. They behave like typical siblings \u2013 they play together a lot but sometimes argue for no reason.<\/p>\n In July 2013 Zoey began taking lonafarnib as part of the\u00a0Trial Expansion<\/a>, and in April 2016, she and her friend Carly were the first to enroll in the new, \u00a02-drug trial<\/a>. For many years, her family has led PRF\u2019s New Jersey Chapter, “Team Zoey,” which provides vital funds toward researching additional treatments and the cure. Follow Zoey on Instagram<\/a> and\u00a0Twitter<\/a>!<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Merlin Waldron” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Merlin2023.jpeg” admin_label=”Merlin Waldron” module_class=”prf-person-module” _builder_version=”4.27.2″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px||false|false” custom_padding=”20px||||false|false” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” border_width_top=”8px” border_color_top=”#8FD2ED” global_colors_info=”{}”]<\/p>\n 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 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>\n [\/et_pb_team_member][et_pb_team_member name=”Alexandra” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/AlexandraMTK.png” admin_label=”Alexandra” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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\u2019s crazy for dancing! Even outside of dance school, Alexandra dances wherever she hears music \u2013 in the car, in the shops, in the supermarket\u2026 She also likes swimming and playing at the swimming pool, where people call her \u201clittle fish.\u201d At home, she\u2019s 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\u2019s 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\u2019s family decided to create their own \u2013 \u201cAsociaci\u00f3n Progeria Alexandra Peraut<\/a>\u201d \u2013 as a way to raise awareness and funds for Progeria research. Alexandra\u2019s parents were challenged to finish the Challenge Madrid Triathlon (full relay) to raise awareness for Progeria and their association<\/a> and to raise funds for research. Take a look at this video<\/a> of the family crossing the finish line, and check out their Instagram<\/a> and Facebook<\/a> for more information!<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Brennen” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Brennen-in-field.jpg” admin_label=”Brennen” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Brennen is a 15-year-old boy from New York. He is very active and loves his dog and his little brother, Owen. Brennen\u2019s 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 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\u00a0Team Brennen Facebook page<\/a>.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Enzo” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Enzomtk.png” admin_label=”Enzo” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 \u2013 ‘Team Enzo’ hosts many fundraising activities to support Enzo in his journey with Progeria.<\/p>\n Enzo was one of the youngest children to enroll in PRF\u2019s 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>\n See Enzo in motion and meet his family in this special video<\/a>, and stay in touch with them on Facebook<\/a>. You can also support Team Enzo on their fundraising page<\/a>.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Kaylee” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Kayleebeach2024.png” admin_label=”Sweet Kaylee” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 Facebook Group!<\/a><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Lindsay” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/LindsayR2024.jpeg” admin_label=”Lindsay” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 \u20187 Going on 70\u2019<\/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!\u00a0 Lindsay enjoys hanging out with her friends when she\u2019s not studying, listening to music, reading, writing, or drawing.<\/p>\n 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>\n [\/et_pb_team_member][et_pb_team_member name=”Michiel & Amber” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MichielAmberMTK.png” admin_label=”Michiel & Amber” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Meet Michiel, 26, who loves snowboarding and kart racing, computer games, hanging with his friends, and \u201cThe Big Bang Theory\u201d.\u00a0 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 multi-lingual site<\/a>\u00a0created 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\u00a0Michiel\u2019s Facebook page <\/a>or on Amber’s Instagram page<\/a>.<\/p>\n We learned a lot about Michiel and Amber through our first game of \u201cSibling Showdown<\/a>\u201d. 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\u2019s favorite activities is shopping! For a closer look into the lives of Michiel and Amber, check out the 2019 PRF newsletter<\/a>, featuring a brief interview with the sibling duo.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Nathan & Bennett” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/NathanBennettMTK.png” admin_label=”Nathan & Bennett” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 \u2018carefree\u2019 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!\u00a0 Both are obsessed with Star Wars, Minecraft and of course, their electronic devices!\u00a0 Despite the differences in their ages and personalities, these two are best friends!\u00a0 See their beautiful brotherhood\/friendship and meet their family in this heartwarming interview<\/a>\u00a0by\u00a0Special Books for Special Kids<\/em>. For more information on this dynamic duo, please visit their\u00a0Facebook Page<\/a>.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Zein” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Zein.png” admin_label=”Zein” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 \u201cso proud to have a child like him.\u201d Get to know more about him here<\/a>.<\/p>\n [\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=”undefined” custom_padding_last_edited=”on|phone” _builder_version=”4.27.2″ custom_padding=”40px|35px|39.0156px|0px|false|false” custom_padding_tablet=”|35px||35px||true” custom_padding_phone=”” border_width_top=”10px” border_color_top=”#8fd2ed” global_colors_info=”{}”][et_pb_column_inner type=”undefined” saved_specialty_column_type=”3_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.27.2″ custom_margin=”3px||5px||false|false” custom_padding=”3px||10px||false|false” global_colors_info=”{}”]<\/p>\n 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>\n [\/et_pb_text][et_pb_team_member name=”Adalia Rose” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Adalia-with-butterflyMTK.jpg” admin_label=”Adalia” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Adalia, a teenager from Texas with a 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 \u2013 her 12 million Facebook followers<\/a> are proof of that!<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Beandri” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/08\/Beandi2024.png” admin_label=”Beandri” module_class=”prf-person-module” _builder_version=”4.27.0″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Beandri is from South Africa and will be 19 years old in November 2024. She is one of four siblings, with three older brothers. \u00a0Beandri loves Afrikaans music and to make people more aware of Progeria by going live on TikTok. She is known as BB on TikTok. \u00a0She earned certificates in Child Daycare and Child Psychology and recently also completed her Life coach studies. \u00a0She loves her dogs and Angel, her marmoset monkey. \u00a0She is very positive, even though she underwent many surgeries. \u00a0Her family has a Facebook page for her,<\/span>“Beandri, our Inspiration<\/a>.” She is a big inspiration to all of us and keeps us positive with her outlook\u00a0on\u00a0life.<\/span><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Cameron” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Cam-with-art-project.jpg” admin_label=”Cameron” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Cam was a big sports fan. If he wasn’t playing sports, he enjoyed watching\u00a0His favorite sports teams; the Pittsburgh Penguins and the Steelers.\u00a0 His favorite foods included chocolate ice cream and pasta. His favorite color was blue and he enjoyed math and video games.\u00a0 Cam was 16 years old when he passed in 2023.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Carly” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Carly_Heart_2016.jpg” admin_label=”Carly” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 YouTube videos<\/a>.<\/p>\n In 2012, Carly Cares, a 501(c)3 non-profit organization was founded to support progeria families and researchers.\u00a0<\/p>\n 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. \u00a0Click Here<\/a> to watch a short video of her with Zoey in Boston. Check out Carly-Q’s Mom on Facebook<\/a>.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Claudia” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/claudia-with-frame.jpg” admin_label=”Claudia” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 \u201cPunched\u201d baked potatoes with salted cod (in Portuguese, it is \u201cBatata \u00e1 murro com Bacalhau\u201d). She also loved music, dancing, and going out with friends. You can check out her Facebook page here.<\/a><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Hayley” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/hayley-blue-MTK.jpg” admin_label=”Hayley” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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 Children of Courage Award<\/em> and appeared in several documentaries and stories about Progeria. You can get to know Hayley by reading her books,\u00a0Old Before My Time<\/a>,\u00a0and\u00a0Young at Heart<\/a>, about living with Progeria. In her words, \u201cmy life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.\u201d What an inspiration!\u00a0<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Jomar” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Jomar-for-website-1.png” admin_label=”Jomar” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Jomar was full of life!\u00a0 He loved to dance and sing.\u00a0 His favorite song to sing was \u201cVamos a la Playa\u201d! 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>\n [\/et_pb_team_member][et_pb_team_member name=”Josiah” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/josiah-on-first-baseMTK.jpg” admin_label=”Josiah” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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\u00a0ESPN\u2019s 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\u00a0\u201cPerson of the Week\u201d\u00a0<\/a>in 2011, Josiah affected people because, as his mom Jennifer says, \u201cHe didn\u2019t let his condition stop him. He was placed here to touch people\u2019s lives.\u201d Josiah served as\u00a0Honorary Bench Coach for the State College Spikes<\/a>\u00a0(A \u2013 Cardinals) baseball team, earning the 2015 Mitauer \u201cGood Guy\u201d Award for his contribution to their championship season and for being a generous, courageous and passionate human being away from the field.\u00a0This heartwarming video<\/a>\u00a0shows how close the team came to their inspirational bench coach during the 2014 season.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Mateo” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MateoMTK.png” admin_label=”Mateo” module_class=”prf-person-module” _builder_version=”4.27.2″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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!\u00a0 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, \u201cFree Fire.\u201d He also likes to play poker and chess.<\/p>\n He doesn\u2019t 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>\n [\/et_pb_team_member][et_pb_team_member name=”Nihal” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nihal-with-Lamborghini-Feb-2015.jpg” admin_label=”Nihal” module_class=”prf-person-module” _builder_version=”4.24.3″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n Nihal from Mumbai, India, passed away in 2016 at the age of 15. Nihal was a\u00a0big science fan who loved to paint. You can see some of his wonderful artwork on his Facebook page,\u00a0TEAM NIHAL<\/a>\u00a0and on his\u00a0Twitter<\/a>, both still active by his Dad, Srinivas. One of Nihal\u2019s 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\u00a0#Finding60inIndia<\/a>, part of PRF\u2019s Find the Other 150 Campaign in partnership with India\u2019s MediaMedic Communications. \u00a0It 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\u00a0video featuring Nihal<\/a>\u00a0for more information.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Zach” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/09\/Zach-age-17-USA.jpg” admin_label=”Zach” module_class=”prf-person-module” _builder_version=”4.27.0″ custom_margin=”||45px” z_index_tablet=”500″ custom_css_member_position=”color: #00b2e2;” global_colors_info=”{}”]<\/p>\n 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. Zach<\/span> exceled in math, loved pizza, cheese bread, cheeseburgers and chicken fingers.<\/p>\n 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 Zach<\/span>\u2019s year by giving him the most awesome gift ever\u2026 tickets to his favorite rock band, Queen! Zach<\/span>\u2019s parents hosted Progeria fundraisers yearly (Zach<\/span> Attack Ride for Progeria).\u00a0 His contagious energy, brilliant sense of humor and smile will live on forever.<\/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=”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\/2026\/03\/2026-footer-image-copy.png” title_text=”2026 footer image copy” _builder_version=”4.27.5″ _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":" \u0623\u0646\u0634\u0623\u062a \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0645\u0648\u0627\u0642\u0639 \u0648\u064a\u0628 \u0648\u0645\u0648\u0627\u0642\u0639 \u062a\u0648\u0627\u0635\u0644 \u0627\u062c\u062a\u0645\u0627\u0639\u064a \u062c\u0645\u064a\u0644\u0629 \u0645\u062e\u0635\u0635\u0629 \u0644\u0623\u0637\u0641\u0627\u0644\u0647\u0627. \u062a\u0639\u0627\u0644 \u0625\u0644\u0649 \u0647\u0646\u0627 \u0644\u0645\u0642\u0627\u0628\u0644\u0629 \u0627\u0644\u0623\u0637\u0641\u0627\u0644 \u062d\u062a\u0649 \u062a\u062a\u0645\u0643\u0646 \u0642\u0635\u0635\u0647\u0645 \u0645\u0646 \u0625\u0644\u0647\u0627\u0645\u0643 \u0644\u062f\u0639\u0645 PRF.\t\t\t\t\t\t<\/p>","protected":false},"author":1,"featured_media":5856,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":" [vc_row][vc_column][vc_custom_heading text=\"Meet The Kids\" font_container=\"tag:h1|text_align:center\" google_fonts=\"font_family:Open%20Sans%3A300%2C300italic%2Cregular%2Citalic%2C600%2C600italic%2C700%2C700italic%2C800%2C800italic|font_style:400%20regular%3A400%3Anormal\"][\/vc_column][\/vc_row][vc_row css=\".vc_custom_1477073686504{margin-bottom: 2% !important;}\"][vc_column width=\"1\/2\"][vc_column_text]Many families have created beautiful web and social media sites\u00a0devoted to their children, giving you insight into their daily lives, and their hopes and dreams for a cure. We hope their stories inspire you to support PRF, so those dreams can come true.<\/p> As of March 31, 2019, here is where the 157 known children* with Progeria live:<\/p> [\/vc_column_text][vc_column_text]*<\/strong> This figure includes 123 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 34 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.[\/vc_column_text][\/vc_column][vc_column width=\"1\/2\"][vc_column_text]Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!In Loving Memory…<\/h3>\n
Sign Up<\/h2>\n
for Our<\/h2>\n
Updates!<\/h2>\n
Together, we<\/h2>\n
WILL<\/em><\/h2>\n
find the cure!<\/h2>\n
![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Map-33119.jpg\")
<\/p>
[\/vc_column_text][vc_column_text css=\".vc_custom_1481585776797{margin-top: -1px !important;}\"]