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Sarasota, Florida
Joined April 2010
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BREAKING: The FDA approved VYKAT XR (formerly DCCR) as the first-ever treatment for hyperphagia in PWS! A huge win for our community!
Learn more: bit.ly/3DWLhTB
Press release: bit.ly/426KZSf
Stay tuned for details, April 16 webinar. #PWSCommunity #FDAApproval
Thank you, @RepMariaSalazar, for your support of the PWS and rare disease community! 💜
On this #RareDiseaseDay2025, I recognize the bravery and contributions of the more than 300 million people living with rare diseases in Miami and across the world.
I’m working hard in Congress so we can find effective treatments and improve lives!
🎉 #GivingTuesday is here! Today only, your gift to PWSA | USA will be matched dollar for dollar up to $25,000, doubling the impact for families and individuals affected by Prader-Willi syndrome.
💙 Donate now: pwsausa.org/angel-drive-2024
We were fortunate to have PWSA | USA's 2024 D.C. Fly-In captured in a unique and authentic way. Watch the longer mini-documentary at youtube.com/watch?v=Jk66FRdF….
Thanks to @SolenoTx for sponsoring the production of these videos. Produced by Believe Limited: The Patient People.
Join the fight to save the future of brain research and ask your members of Congress to sign on to fully fund the BRAIN Initiative. This Initiative faces a 40% budget cut, jeopardizing crucial advancements in understanding conditions like PWS. Learn more: pwsausa.org/preserving-progr…
Harmony Biosciences is now seeking participants for its TEMPO study, a global Phase 3 trial investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) and behavioral symptoms in individuals PWS. Learn more: pwsausa.org/harmony-bioscien….
Today kicks off PWSA | USA's Family Support Campaign! From NICU to independence and beyond, we're here for every step of the PWS journey. Your donation ensures families continue to receive the assistance and resources they need. Join us in spreading hope: pwsausa.org/familysupportcam…
PWSA | USA is pleased to announce a new partnership with the The Foundation for Prader-Willi Research and the International Prader-Willi Syndrome Organisation to host United in Hope – an International PWS Conference in Phoenix, Arizona!
Learn more: pwsausa.org/2025-united-in-h…
Exciting news! PWSA | USA is now collecting artwork for our new initiative - The Rare Aware Art Share! 🎨 We invite ALL individuals living with Prader-Willi syndrome to participate in this global art share.
Learn more: pwsausa.org/pws-rare-aware-a…
New clinical trial site announced for Acadia Pharmaceuticals' COMPASS PWS study 📢
📍 University of Iowa Hospitals and Clinics – Stead Family Children’s Hospital
Find more information, including contact information and additional trial sites at compasspws.com/find-a-resear….
PWSA | USA staff members share a few PWS Myths vs. Facts they've heard over the years. What are some you've heard or been told?
#PWSAwareness
PWSA | USA's 2024 D.C. Fly-In application is NOW AVAILABLE! ✈️
Download the application and learn more at pwsausa.org/events/dc-fly-in….
#PWSAdvocacy #DCFlyIn #PWSAUSA
TOMORROW is the LAST DAY to make an impact! You can support families and individuals affected by PWS and PWSA | USA's 2024 programs/initiatives by donating to pwsausa.org/angeldrive2023/. Your year-end, tax-deductible gift ensures we can continue to provide HOPE 24/7/365 💙
YOU can help make a lasting impact! PWSA | USA's 2023 Angel Drive Campaign will end in just 1 WEEK. If you would like to make a contribution, there is still time to support our Advocacy, Family Support, and Research efforts in the new year at pwsausa.org/angeldrive2023/. Thank you 💙
For those who are celebrating, #MerryChristmas from all of us at PWSA | USA! We hope you are able to enjoy this time with friends and family.
Happy holidays from our PWSA | USA staff and their families to yours! Read CEO Stacy Ward's special end of year holiday message at pwsausa.org/happy-holidays-f… 💜
Help be a positive force in our work and propel the momentum forward by Giving the Gift of HOPE to ensure we can continue TAKING ACTION in the new year: pwsausa.org/angeldrive2023 💙
Your 2023 Angel Drive donation goes a LONG way!
Make a gift to pwsausa.org/angeldrive2023/ by December 31, 2023 to help PWS families in the new year 💙
