A special contribution by Amanda Dunn, Host of HopeFull: Funding a Cure for Prader-Willi Syndrome, Cincinnati, OH
For our 5-year-old son Aaron, it all starts with a hug.
Not just any hug. He has a signature, enthusiastic hug. It’s clear just how capable and happy he is by the strength of that hug — and he offers it to everyone he meets. It's one of the things that has powered our fundraising for PWS research and brought our community together to secure a "hopefull" future for people with PWS.
Shortly after he was born, Aaron was diagnosed with Prader-Willi Syndrome. Despite the enormous challenges of living with PWS, Aaron has grown and developed into a strong, loving and exuberant kid with the help of his family, friends, team of doctors, therapists and teachers.
Aaron's only five, but if he were older, here's how he might introduce himself: "I love giving hugs, riding the bus, playing pretend, my brother and being a helper. I also have Prader-Willi Syndrome."
"It's not easy having a rare genetic disorder, but I don't let it slow me down. Prader-Willi Syndrome is something that I have, but it isn't who I am. In a lot of ways, I'm just a normal kid. It's definitely harder for me to be active, but I enjoy playing outside and riding my bike. This year, I wake surfed for the first time, and it was so fun!"
Our family has always valued research and the potential it brings to our son's future. In the fall of 2017, our family and my incredible work family at The Brand Experience hosted our first Hopefull Event, benefiting the Foundation for Prader-Willi Research.
FPWR is making strides to eliminate the many challenges of living with PWS, and we're continuing to rally support to show just how hopefull we are about the work FPWR is doing and Aaron’s future. Year after year our network of family and friends come out to show their support of Aaron and I never cease to be amazed by the outpouring of support we receive, and the amount of research we are able to fund as a result!
We have Aaron, his hugs, and our amazing community to thank for that.
Join Team FPWR
It's only through the dedication of our volunteer PWS advocates and fundraisers that we're able to fund the best research in the world in order to find treatments for PWS. Today, because of the the efforts of hundreds of volunteers, we are enrolling multiple drug trials and additional trials are on their way. There is so much to be optimistic for! But we must keep pressing forward and funding the transformative research that will allow our loved ones to live FULL and independent lives. We invite you to join Team FPWR as we raise the funds which are critical to move forward PWS research. Learn more about our fundraising opportunities or contact Sarah Peden or Jacqueline Mizon who can help you get started!