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PRF Family Quotes

A few words on PRF from the families in our community

We asked parents what PRF has meant to them, and were overwhelmed by their responses!

This is why we do what we do.

Zach and his mom, Tina; USA

“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

Enzo & his parents; Australia

 “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

Cam and his mom; USA

“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

Meghan & her parents; USA

 “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

Zach & his friend, Terry; USA

 “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

Brennen & his mom; USA

 “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

Alexandra & her parents; Spain

 “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

Kaylee celebrates her 17th birthday; USA

 “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

Shreyash & his family; India

 “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

Zoey & her parents; USA

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

– Laura, Zoey’s mom

Nathan, Bennett & family; USA

 “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)

Aahan & his parents; India

 “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

Prachi & her dad; India

 “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

Sammy & his parents; Italy

“When the doctors diagnosed Sammy with Progeria, we knew nothing about this disease, so we searched online, and we found PRF. We met Audrey Gordon in 2000, along with Leslie, Scott, and Sam, and we became fast friends. In 2006, they invited Sammy for Progeria clinical testing, followed by the first Progeria clinical trial. It was like a door, full of hope, was opening for us…
PRF did and is doing exceptional things. We knew from the start that they put their heart and soul into helping all the teens and children with this disease. We immediately gained a great family.
For us, PRF is such a lifeline… PRF gives us great hope. When we come to Boston, we feel safe, we have no fear for the clinical trials, nor for the new drugs… because we know that they are working also with their own heart, and this is very important to us!
-Amerigo and Laura, Sammy’s dad and mom

Zein & his mom; Egypt

 “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

 

Aaditya & his family; India

 “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