PRF Family Quotes

“Connecting with PRF filled us with such relief – someone was out there who cared about my son, who was fighting for a cure. They give us peace of mind, knowing there are world-class researchers in our corner, working to cure this fatal disease. I’m so grateful to PRF for fighting for Zach every day, and for making Zach and our family’s future brighter.”

– Tina, Zach’s mom

 “We are so lucky to have The Progeria Research Foundation – they give us hope… thank you to all the people who support us, making our journey with Progeria lighter.”

– Catherina, Enzo’s mom

“I don’t know how to thank you for all that you do and have done for Progeria families. I frequently tell people who don’t know about PRF how lucky we are to have you helping our kids. Please know that you have made a huge difference in our lives.”

– Stephanie, Cam’s mom

“When we first found out that Meghan had Progeria (at age 2), the average life expectancy was 13 years old… we thought 13 years was a long way away, and it came so fast! And now she’s 19, she’s healthy, she’s strong, she puts her mind to what she wants to accomplish in her life and she just goes for it.

When we found The Progeria Research Foundation, I had an extreme moment of relief, comforted by the fact that there was someone in our corner working on this problem. They approach solving the problem with such excellence that I know together we WILL find the cure!”

– Bill, Meghan’s dad, 2021

 “While I wish PRF had existed for my daughter Amy, who passed away in 1985, I was blessed to have her, and it’s a blessing that PRF is now here for the children and their parents. ”

– Terry, Amy’s mom

 “PRF has blessed us with the gift of hope in our fight to find a cure for Progeria. When Brennen was first diagnosed, we were lost and distraught, not knowing where to turn to next, but the caring staff and loving families we’ve met through PRF have stood beside us every step of the way. We have truly gained a Progeria community family.”

– Erin, Brennen’s mom

 “We’re eternally grateful to PRF for giving us the light and hope we needed when we realized that our 2-year-old daughter, Alexandra, was the only case of Progeria in Spain. The wonderful PRF team and their network of incredible professionals welcomed us with open arms – they gave us all their love and support and have accompanied us on this hard journey, including Alexandra in their clinical trials, giving us guidelines to improve her quality of life and investigating without rest to find a cure for our daughter. To those who’ve supported PRF along the way, we greatly appreciate your collaboration with PRF so that Alexandra and her peers have a bright future.”

– Cedric, Alexandra’s dad

 “To me, The Progeria Research Foundation means hope and support. It’s scary dealing with a rare disease, and I know that if I have any questions, they’ll do their best to help. They’ve also helped parents with Progeria connect to share their experiences. I know they’re working hard to find new treatments and a cure, and I can’t imagine life without The Progeria Research Foundation.”

– Marla, Kaylee’s mom

 “In 2017, we learned about PRF and that our son, Shreyash, could get treated. PRF came as a ray of hope and has supported us in so many ways. They considered each and every detail during our trip to Boston so that we were comfortable, including accommodations and travel, as well as covering our trip back to India. Because of PRF, we have hope. Also, the love that Shreyash gets from PRF is impeccable. I don’t think anyone has ever done so much.”

– Arvind, Shreyash’s dad

 “PRF is our lifeline… a family… our hope for amazing things to come.”

– Laura, Zoey’s mom

 “We want the same as everyone else – we want our boys to grow up… PRF is our hope and keeps us going.” 

– Phyllis (Nathan and Bennett’s mom)

 “The Progeria Research Foundation and their clinical team are doing a terrific job and they have a very good sense of service. They have done a lot for us and we extend our heartfelt gratitude and best wishes to them.”

– Manish Maheshwari, Aahan’s Dad

 “After visiting Mumbai for Prachi’s check-up initially, we first learned about Progeria, and we were worried. But that timely call from PRF helped us to be at peace. Once we visited Boston (for Prachi’s clinical trial), we realized the phenomenal work done by PRF, who has over the years become a strong support system for us. I am thankful to them and hope to see them fulfill all of Prachi’s dreams.” 

– Bikash, Prachi’s dad

 “I cannot find words to describe how happy I felt during this trip [to Boston, for Zein’s lonafarnib treatment], with the encouragement and hope of every person I met. I thank you for giving us the power to fight Progeria.”

– Dina, Zein’s mom

 “We learned Aaditya had Progeria in 2014. The Progeria Research Foundation was a blessing coming into our life. With their help, we’ve been able to successfully provide our child with medical assistance that we never would have known about. Over the past few years, PRF’s support has helped him physically, as well as emotionally. We are very thankful to them. My son, Aaditya keeps talking about his trip and carries good memories from the USA.”

– Uttam, Aaditya’s dad