A special contribution by guest blogger Andrew Comer
The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife Stephanie and I decided it was worth me heading to the conference to learn more about Lucy’s condition and how we could make the most of her future.
It had been a roller coaster six months. The sheer joy of Lucy’s arrival was followed by a diagnosis that suddenly made the future seem like something to fear. Despite our best efforts, the grief and worry for Lucy would come in big, crashing waves that felt at times unmanageable, especially as we navigated the NICU, the subsequent challenges of her care at home, and the needs of her older sister.
The conference in Chicago helped us turn that tide because we discovered how much there is to be hopeful about. We learned about the groundbreaking research being undertaken by scientists with FPWR’s support, the promising drug pipeline, new therapies, standards of care, and the vast network of healthcare experts dedicated to improving the lives of people with Prader-Willi Syndrome.
Just as important, we made connections with families who share the same challenges and the same joys. We built relationships with three families from Denver, our hometown, who we’ve since shared ideas with, gone to happy hours with, and gained strength from.
We all share excitement that the 2023 conference is coming to us this October. Denver is a great place to call home, and we’re fortunate that Lucy has received wonderful care here. Several of her health care providers from Children’s Hospital Colorado are speaking at the conference, and we’re thrilled to be learning more from them and that others can, too.
I know the Colorado PWS community can’t wait to see you in our backyard. We hope you have the opportunity to make a trip of it—attend the gala, visit Washington Park or City Park, have a drink at our many microbreweries (Denver Beer Company is my favorite), check out Red Rocks (it’s a city park when it’s not hosting concerts), visit the family-friendly Denver Zoo, go for a hike in nearby Boulder, or just walk around our growing city.
We’re eager to meet you, learn with you, celebrate with you, and share the hope we have for what lies ahead!
