Angel Drive 2024 Hub

As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity.

Sharing and Celebrating Our 2024 Achievements

Our 2024 D.C. Fly-In saw 150 advocates participate in over 130 congressional meetings, resulting in a letter of support for PWS signed by 27 elected officials.
The voice of individuals with PWS was amplified by the community’s historic Voice of the Patient Report and PWS Advocacy Coalition Petition to the FDA, advocating for Soleno Therapeutics’ DCCR new drug application and future treatments, AND the re-launch of our Adults-with-PWS Advisory Board.
We helped over 50 teens and adults living with PWS develop essential communication skills to better navigate relationships through our BOSS Program.
We launched the PWS United Podcast to share resources and stories, fostering community connection. Our first-ever Residential Providers Conference brought together over 100 providers to improve care for individuals with PWS.

Looking Ahead to 2025: Celebrating 50 Years of Impact

As we approach our 50th anniversary in 2025, we reflect on our progress and renew our commitment to the PWS community. To advance this important work, we need your support.

Join Our 2024 Angel Drive

Make a gift to the 2024 Angel Drive before December 15th, and you’ll be entered to win one of four fantastic prizes: an Apple Smart Watch, a $300 Amazon Gift Card, Custom Nike PWS Sneakers, or a PWSA Swag Bag!

By giving your gift of HOPE, you’ll help us remain a lifeline, ensuring families can access vital resources, from critical support services to advancing research, advocacy, and awareness. Your tax-deductible gift guarantees that PWSA | USA can continue providing hope, 24/7/365. Thank you for being part of this journey and for your unwavering commitment to the PWS community.

It has been said that each of us needs just three things to be truly happy in this world: someone to LOVE, something to HOPE for, and something to DO. Together with our Prader-Willi syndrome community near and far, our mission requires all three.

WE LOVE

They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.

WE HOPE

They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.

WE DO

They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends living with the obstacles that come with this rare and complex diagnosis of PWS.

Support PWSA | USA

Hope in Action

The Hope in Action series shares powerful stories of resilience and hope from the Prader-Willi syndrome community, highlighting the many ways PWSA | USA is making a difference. From school support to crisis assistance, advocacy, and more, each story showcases the real-life impact of our programs and the strength of our families.

Grandparents’ Stories of Love and Resilience

Grandparents bring love, strength, and resilience to families navigating Prader-Willi syndrome. In this Hope in Action video, grandparents Donna Stephens and Steve Leightman share their inspiring journeys—advocating on Capitol Hill, embracing everyday joys, and finding hope through PWSA | USA’s support.

Shaping Policy, Sharing Our Stories

In this inspiring Hope in Action video, we highlight PWSA | USA’s biennial D.C. Fly-In, where individuals living with Prader-Willi syndrome, like Conor Heybach, had the opportunity to step forward to share their personal stories with policymakers. Advocacy is a cornerstone of PWSA | USA’s mission, and thanks to donor support, we’re empowering families and individuals to make their voices heard and create lasting change. Your support makes our advocacy work, including the D.C. Fly-In event, possible.

WINTER COLORING SHEETS

Download our Winter Coloring Sheets for a fun family activity this holiday season.

SHARE YOUR HOPE!

Join the heartwarming movement by sharing your HOPE! Help us understand the impact PWSA | USA has had on you and your family’s PWS journey. Your unique story is invaluable, and we invite you to fill out the form below. In the form, you’ll find a couple questions, along with an opportunity to share a cherished photo that encapsulates your journey. As we embark on our Angel Drive campaign, these testimonials will serve as powerful beacons of inspiration, fostering hope and solidarity within our cherished community. We sincerely appreciate your participation!

Name
First Last
Name of your loved one living with PWS:
Age of your loved one living with PWS:
State you live in:
Email
Question 1: How has PWSA | USA given you hope on your journey?
Question 2: Why would you encourage people to support PWSA | USA?
Share a photo of your family and/or loved one.
Consent
I Agree to PWSA | USA's Media Consent Policy
By clicking here, I hereby authorize and grant my full permission to Prader-Willi Syndrome Association | USA (PWSA | USA) to collect, use and store any of my personal information, including, without limitation, my likeness, image, voice, and/or statements (“the personal information”) for posting on the PWSA | USA website or social media pages, to use for printed publications or for other purposes that may convey my identity (names may be used unless otherwise specified), diagnosis and other information.

I acknowledge that:

1. I have the authority to grant this authorization and I hereby waive any rights of privacy and other cognizable claims which I may have in connection with the use of the personal information on the PWSA | USA website or social media pages, in printed or other publications, or for other purposes. I understand that this consent is intended to release from liability all personnel of PWSA | USA and is valid unless and until revoked as described below.
2. I understand that the personal information provided to PWSA | USA may reveal sensitive health information about me, including health conditions, diagnosis, and treatment.
3. I understand that any personal information I share with PWSA | USA may be included in various media, including, without limitation, print and digital media, audio and video recordings, photographs, and written statements.
4. I agree that PWSA | USA shall own worldwide copyright and other intellectual property rights in any work product incorporating the personal information. Under this authorization, I assign and transfer to PWSA | USA full worldwide right, title, interest in and ownership of all copyright and other intellectual property rights in such work product without payment of any fees, royalties or other compensation.
5. I understand that I may revoke this authorization at any time by sending an email to PWSA | USA at events@pwsausa.org which identifies the information covered by the revocation. Upon receipt of this notice, PWSA | USA will endeavor to stop using this information within a reasonable time after receipt of such notice.
6. I acknowledge that I am signing this authorization voluntarily and that I am not required to sign this authorization as a condition of eligibility to receive any benefits or services from PWSA | USA. I understand that I may refuse to sign this form.
7. If I have any questions about my privacy rights under this authorization, I understand I may contact PWSA | USA by sending an email to: events@pwsausa.org . The terms of this authorization are not linked to any other agreement, nor to the term of any other agreement, and the terms of this authorization will survive until a request for revocation is submitted as described above.