We at PWSA | USA are grateful to be a part of this connected, passionate community and for the opportunity to provide support to families and individuals living with PWS. With your help, along with our hard-working staff and diligent volunteers, we have been able to spread our support to families around the country and beyond. In 2023, PWSA | USA was able to:
- Respond to 3,447 Family Support inquiries
- Provide training and IEP support at 94 schools
- Host 350 attendees at the FDA Externally-Led Patient-Focused Drug Development meeting
- Recruit 60 advocates to speak with elected officials in over 150 meetings for the PWS community
- Procure a Congressional Resolution declaring May 15th as PWS Awareness Day
- Host nearly 1,000 attendees in Orlando for our largest National Convention in 50 years
- Support a country-wide State Qualifier Campaign to help get PWS recognized at the state level
- Launch the Building Our Social Skills (BOSS) curriculum for teens and adults living with PWS
- Help expand the knowledgebase of Health Care Providers through ECHO 4 PWS. We are proud to be the first PWS organization to implement Project ECHO® in the U.S.
If you are inspired to help us continue this trend of progress and hope, our Angel Drive is open for donations until December 31, 2023.
To ensure we continue to meet your needs effectively, we invite and encourage you to participate in our brief community feedback survey. By gathering your insights, we can enhance our efforts to connect, inform, and engage with each of you in the most meaningful ways. Your participation in this survey will empower us to create a more informed, responsive, and supportive community for individuals with Prader-Willi syndrome and their families.
As we say goodbye to 2023 and look with renewed hope towards what exciting changes 2024 will bring, we want to wish you all a wonderful holiday season and remind you to continue to dream big for our loved ones with PWS. Together, we are making life better.
May you enjoy the rest and rejuvenation of these winter nights and face the new year refreshed and inspired.
Stacy Ward, MS
PWSA | USA CEO