Texas Prader-Willi Association

05/25/2026

05/01/2026

The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Learn more about several different ways YOU can make an impact at https://www.pwsausa.org/how-you-can-make-a-difference-this-pws-awareness-month/

04/13/2026

SAVE THE DATE: TH, April 23, 6:30-8:00PM CST. Register Now!

In honor of VYKAT XR’s one-year anniversary, PWS community members are invited to register for Soleno’s upcoming webinar. Join to learn about the signs and symptoms of hyperphagia in Prader-Willi syndrome and find out if VYKAT XR may be right for you or your loved one. VYKAT XR is approved for people ages 4 and older with hyperphagia in PWS. The webinar will take place Thursday, April 23, 2026, from 7:30–9:00 pm ET (4:30–6:00 pm PT).
🔗Register to attend: https://event.on24.com/wcc/r/5262694/3C5A5533A82C934B4417F76CCD576893
📄Download the flyer:https://www.pwsausa.org/wp-content/uploads/2026/04/April-Webinar-Invite_vFINAL.pdf

03/31/2026

NEXUS PWS JUMP START
PROGRAM
Please note: I have a new email address at work: June Finnerty: [email protected]
As always, if I can help you with struggles concerning your child with Prader-Willi Syndrome, contact me.
Nexus PWS Jump Start Program addresses all aspects of this profoundly challenging disorder.

The Nexus Jump Start Program is the only nationally recognized inpatient program for children with Prader-Willi Syndrome (PWS) and pediatric obesity.

03/25/2026

Come on Texas we need to follow suit!! Post by Cheri Wood

https://www.facebook.com/share/1Gx78N2m1j/

Today on the Senate Floor, Senate Bill 742, the Maryland Protecting People With Disabilities Act, passed second reading with amendments! This is great news for Marylanders with intellectual and developmental disabilities, as it would require the state of Maryland to follow timelines and provide help to prevent Medicaid and waiver services from ending, and if Medicaid coverage has ended, help to get Medicaid back. Since January 2024, people have been losing their Medicaid, and even when they reapply, some are told they need to wait for a slot to open up before they can restore services. The bill is expected to go to third reading in the Senate later this evening before hopefully making its way to the House. Thank you to the countless advocates who shared their testimony in committee hearings to make this possible!

03/24/2026

PWS featured in USA Today!

We’re excited to share that Prader-Willi syndrome is being highlighted on a national stage through a recent article featured in the 2026 Rare Diseases Special Section of USA Today, with additional digital placement on the Future of Personal Health hub. This important opportunity was made possible by Soleno Therapeutics.

The article shines a light on the complexity of PWS and the significant impact of hyperphagia, reinforcing the urgent need for increased awareness and access to specialized care. It also features a powerful quote from our own Stacy Ward, PWSA | USA's CEO.

This far-reaching campaign includes a national print insert, digital promotion across USA Today and Future of Personal Health platforms, distribution via PR Newswire, and visibility at major industry conferences such as the BIO International Convention and World Orphan Drug Congress. The campaign is also being amplified by several rare disease advocacy organizations.

Together, these efforts help elevate awareness of PWS and bring critical attention to the needs of individuals and families affected by this complex condition. Read the full USA Today article at https://www.usatoday.com/story/sponsor-story/solenotherapeutics-fph/2026/03/13/prader-willi-syndrome-pws-a-rare-condition-with-everyday-challenges/88610469007/.

01/19/2026

Huge Awareness News for the PWS Community! We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an exciting new awareness initiative that will be featured during this year’s Super Bowl – an ad in the Super Bowl printed program 🏈💙
Here's a preview of the ad that will be included. The powerful message – “No end zone. No final whistle. Just goal posts that keep moving.” – brings national attention to the realities of Prader-Willi syndrome, including the relentless challenges of hyperphagia and the constant drive for food experienced by so many in our community.

Learn more at https://www.pwsausa.org/pwsa-usa-and-soleno-therapeutics-take-pws-awareness-to-the-super-bowl/. Thank you, Soleno for helping bring PWS to one of the largest stages in the world!

01/17/2026

This is absolutely amazing!! More awareness & understanding!! Better every day!! Thank you to PWSAUSA & Soleno❤️

Huge Awareness News for the PWS Community! We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an exciting new awareness initiative that will be featured during this year’s Super Bowl – an ad in the Super Bowl printed program 🏈💙
Here's a preview of the ad that will be included. The powerful message – “No end zone. No final whistle. Just goal posts that keep moving.” – brings national attention to the realities of Prader-Willi syndrome, including the relentless challenges of hyperphagia and the constant drive for food experienced by so many in our community.

Learn more at https://www.pwsausa.org/pwsa-usa-and-soleno-therapeutics-take-pws-awareness-to-the-super-bowl/. Thank you, Soleno for helping bring PWS to one of the largest stages in the world!

01/16/2026

This week's Resource Spotlight highlights our PWS Fact Sheets. These documents address stages in the life of your loved one with PWS: Infant, Toddler, School Age and Young Adult, and Adults. Each fact sheet offers a brief overview of the PWS, common features, health concerns, and specific ways you can support your loved one during this stage of life. You can download these fact sheets at https://www.pwsausa.org/resources-a-z-pws-fact-sheets/

01/15/2026

The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community.

Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa Strong, Director of Research for FPWR, Dr. Jessica Bohonowych, Associate Director of Research for FPWR, Lisa Matesevak, Study Coordinator for FPWR, and Lynn Garrick, Medical/Research Coordinator for PWSA | USA. They discussed the many surveys available and the importance of gathering this data from families. Not only are these surveys helping to inform the medical and research community on the many nuances of PWS, but it can also serve as a living medical record for families. The Global Registry has been updated to a more intuitive platform, making it easier for families to complete surveys and view the information submitted by the community. They also discuss the exciting implications for the upcoming VYKAT survey which will help document in real-time the effects of the first-ever FDA approved treatment for hyperphagia in PWS.

To learn more and sign up for the registry, please visit https://pwsregistry.org/

Listen to this episode at https://pwsunited.podbean.com/