A special contribution by guest blogger Will Greene
When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to attend this year’s FPWR Annual Conference. I look forward to meeting some of you there.
Ari is now 7 months old and doing well, but as I’m sure many of you can relate to, the first few months were dark days for our family. It was a time of fear and confusion, punctuated by repeat visits to the ICU, persistent feeding difficulties, shattered expectations about parenthood, and an avalanche of unexpected medical bills (pregnancy, neonatal, and congenital disease care are largely unreimbursed here in Singapore).
Stumbling upon the content and community on the FPWR website was one of the first things to give us hope that a happy and meaningful life is possible. Our clinicians here were technically proficient, helping us to get access to quality care in the initial months, but none of them provided much in terms of emotional support, long-term life planning, or encouragement to work on novel solutions for a disease with no cure and limited treatment options.
FPWR’s content and community filled that void and provided much-needed inspiration at a time of crisis. We understand that PWS is a challenging condition and we certainly don’t want to sugarcoat the situation, but we also feel that the diagnosis infused us with a new and higher sense of purpose: to not only give Ari the best possible shot at a great life, but also to support the broader PWS community in this shared mission.
To that end, Vy and I have launched a fundraiser to help support FPWR, and as part of that effort, we will be hosting a cocktail party for PWS research at a leading contemporary art gallery in New York City on Tuesday, Sept 27. If you live in the New York area and are interested in joining, please get in touch and we can arrange an invite. You can find me on social media, including LinkedIn and Twitter, or ask your contacts on the FPWR team to connect us by email.
Otherwise, I look forward to connecting with the broader FPWR and PWS community in Chicago. I will personally be there for both the Research Symposium and Family Conference. Vy and Ari will be staying behind in Singapore this time, but perhaps as our personal situation stabilizes, you will get to meet all of us in person one of these days.