The Progeria Research Foundation

Job Opening for Director of Communications – Elevate Awareness, Drive Impact Join Our Mission The Progeria Research Foundation (PRF) is the only nonprofit in the world solely dedicated to discovering treatments and a cure for Hutchinson-Gilford Progeria Syndrome (Progeria), a rare genetic condition that accelerates aging in children. Since 1999, PRF has transformed Progeria from an overlooked disorder into a leading area of scientific research, resulting in an FDA-approved treatment that is extending lives. Founded by Drs. Leslie Gordon and Scott Berns after their son, Sam, was diagnosed, PRF emerged from a critical need—there was no research, no treatment, and no hope for children with Progeria. Today, PRF funds and facilitates cutting-edge research, supports families worldwide, and leads groundbreaking initiatives to raise awareness. Sam’s legacy continues to drive PRF’s relentless pursuit of a cure. PRF has also played a pivotal role in global public awareness efforts, from securing top-tier media coverage to partnering with HBO on an Emmy Award-winning documentary and featuring in one of the most-viewed TEDx Talks of all time. Now, we are looking for a Director of Communications to take our mission to the next level. https://lnkd.in/ec6cd3MG

??T-minus 5 weeks until #MarathonMonday! Meet PRF's #BostonMarathon team member Charu Panajkar. “I hope that you will take the time to learn more about the incredible work The Progeria Research Foundation is doing and consider donating to my page in support of them.” ~Charu ?? https://lnkd.in/eK5fMt7g “I am honored and proud to be representing and supporting PRF at the Boston Marathon. I always strive to give back by supporting various charities who are committed to improving lives. As soon as I decided to finish the Abbott series, I knew that I wanted Boston to be the last star in my cap because of the wonderful spirit of giving that surrounds the race.”~Charu Charu Panajkar is originally from Mumbai, India but currently lives in Cary, North Carolina. #baa #BankofAmerica #findthecure #Progeria #runningforcharity

TOGETHER WE WILL FIND THE CURE ?? Leslie Gordon e Scott Berns, mamma e papà di Sam, grande amico del nostro Sammy sono venuti in Italia da Boston ad incontrare il direttivo A.I.Pro.Sa.B. Questa è stata l'occasione per raccontarci dei progressi della ricerca, che al momento sono ad un vero e proprio punto di svolta! ?? Questi due straordinari genitori sono stati tra i fondatori della @progeriaresearch, fondazione americana che dal 1999 ha avviato una ricerca in grado di dare risposte a medici e famiglie, ma soprattutto di iniziare i clinical trial e i progetti che ci stanno conducendo ad una cura vera e propria ???? Grazie Leslie e Scott per la vostra amicizia e per il vostro lavoro! Grazie per insegnarci verso dove dobbiamo guardare. #sammy #sammybasso #sam #samberns #progeria #progeriaresearch #ricerca #scientifica #italia #usa #associazione #aiprosab

?? SAMMY RUNS BOSTON ?? Boston è stata una città davvero importante per Sammy; lì ha iniziato i primi clinical trial e ha sviluppato piano piano la sua passione per la scienza, arrivando a collaborare in prima persona alla ricerca scientifica per trovare una cura definitiva per la Progeria. Questa città, quindi, rappresenta una luce di speranza per tutti i malati di Progeria ?? Ognuno può fare la sua parte per sostenere la ricerca che A.I.Pro.Sa.B. APS sta portando avanti anche grazie a questo progetto. Scoprine di più sul nostro sito ???? https://lnkd.in/duD2NY_V #sammy #sammybasso #sammyrunsboston #boston #bostonmarathon #maratona #ricerca #progeria #aiprosab #beneficienza #progeriaresearchfoundation #prf

T-minus 6 weeks until #MarathonMonday! ??Meet PRF's Boston Marathon team members Andrea Tapparello & Andrea Tonietto from Sammy's Runners ???? "Hi amazing supporters! I'm Andrea, 30-year-old from Italy, and I'm here in Boston to run the marathon in honor of my dear friend Sammy Basso, who passed away in October 2024. I am, running not just for Sammy but for all the lives his legacy continues to touch. Your donation helps push forward vital research and keeps Sammy's dream alive. Let's run this for Sammy!" ~Andrea Tapparello https://lnkd.in/eMAm9--b "Hi, I’m Andrea, a 29-year-old runner from Italy. I'm running the Boston Marathon in the memory of my friend Sammy Basso, the oldest person in the world affected by #Progeria, who passed away 2 months ago. Together with Sammy, we dreamed of running the Boston Marathon with the The Progeria Research Foundation team to raise money to find a cure for Progeria. So what are you waiting for? Help me to realize Sammy's dream. Together we WILL find the cure!" ~ Andrea Tonietto https://lnkd.in/eVm6eX6g #BostonMarathon #baa #BankofAmerica #findthecure #Progeria #runningforcharity

Become a MONTHLY Donor! Show your love ?? for the #Progeria community by joining PRF’s Champion for the Cure monthly giving program, and be a vital part of PRF’s mission to bring stronger hearts ?? and longer lives to children & young adults with #Progeria around the world. For as little as $5 a month, you will provide a steady flow of support that we can rely on to bring treatments and the cure to children & young adults with Progeria. ??It’s easy and fast – Go to: https://lnkd.in/ej3erefy Your monthly or quarterly donation will be made directly from your credit card to The Progeria Research Foundation. Thank you ?? to all who have joined our Monthly Donor program. You ARE making a difference?? #Progeria #championforthecure #monthlygiving

Sam was the inspiration behind the creation of The Progeria Research Foundation. He continues to inspire us in our mission to cure #Progeria and the world with his words of wisdom. Share the love to keep Sam’s positive vibes flowing around the world. ?? Watch it here: https://lnkd.in/etVpCtCU Donate in honor of Sam: https://bit.ly/PRFSMDonate #Tedtalk# samberns #Progeria #happylife https://lnkd.in/dYcC7i9

T-minus 7 weeks until #MarathonMonday! Meet PRF’s #BostonMarathon team member Ann Katliarov ?? Help Ann reach her fundraising goals: https://lnkd.in/eZCUvv_C "Join me on my journey to run my first Boston Marathon while supporting The Progeria Research Foundation." ~Ann #BostonMarathon #baa #BankofAmerica #findthecure #Progeria #runningforcharity

The Progeria Research Foundation Co-Founders Drs. Leslie Gordon & Scott Berns speaking as thought leaders at CiMUS, Spain CiMUS (Center for Research in Molecular Medicine and Chronic Diseases) at the University of Santiago in Spain has invited PRF co-founders to share their story at a special event on Rare Disease Day 2025. ?? Donate to The Progeria Research Foundation: https://bit.ly/PRFSMDonate https://lnkd.in/e-iczk43 #clinicaltrial #research #raredisease #heartdisease #ShareYourColours, #LightUpForRare #Progeria

On this Rare Disease Day please help us spread the word! Access our infographic here, which explains signs and symptoms of #Progeria, some basic facts on Progeria, and how PRF is helping families. Progeria may be rare, but our awareness doesn't have to be! ?? Donate to The Progeria Research Foundation: https://bit.ly/PRFSMDonate https://lnkd.in/eNtCXzwG #heartmonth #monthlydonor #clinicaltrial #research #raredisease #heartdisease #RareDiseaseDay2025 #ShareYourColours, #LightUpForRare