The centerpiece of PWSA | USA's 2022 Advocacy initiative is our first ever D.C. Fly-In. This exciting, in-person event will take place September 19 - 21, 2022 in Washington, D.C. and provide an opportunity for our state activists to expand their efforts and engage their individual members of Congress. Our platform will be to encourage...
Category: Awareness
Join us for our May Advocacy in Action Webinar!
PWSA | USA's next Advocacy in Action webinar will take place on May 25, 2022 at 8:00 p.m. EST Topic: We The Patients, a preview to Rare Disease Legislative Advocates (RDLA) Speaker: Rachel Derby, Executive Director of Policy and Advocacy for Patients Rising Now
It’s Teacher Appreciation Week!
Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you? I know I would not be. I considered being a teacher – who does not love the idea of getting out of work by three...
The 2022 Giving Challenge is now LIVE!
The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...
Hyperphagia and How it Affects Learning
Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...
National Siblings Day: Joe Gill
April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...
FDA Advocacy in Action Webinar Registration Now Available!
Advocacy in Action presents… Engaging with the FDA: Opportunities and Boundaries WHEN: April 27, 2022 at 3:00PM EST REGISTER HERE As our community continues down the ever-evolving road of drug trials to enhance the lives of those who have Prader-Willi syndrome (PWS), PWSA | USA invites you to join us for a live webinar featuring two...
Lawmakers Review Several Legislative Proposals Intended to Accelerate Innovation of Therapies, Including STAT Act
On Thursday, March 17th, the House Energy & Commerce Subcommittee on Health held a hearing regarding The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight. This hearing explored a number of legislative proposals intended to accelerate innovation of therapies, while ensuring appropriate levels of oversight, including H.R. 1730, the Speeding Therapy Access Today...
STAT Act to be Discussed in Congressional Hearing – Get in Touch with your Members of Congress!
URGENT CALL TO ACTION!! Due to the tremendous momentum created by Rare Disease Week on Capitol Hill, The Speeding Therapy Access Today (STAT) Act will FINALLY be discussed in a Congressional hearing on Thursday, March 17th at 10:30AM EST! This is a MAJOR milestone across all rare disease communities' efforts to pass targeted and impactful...
April Webinar Series to Provide Health Care Advocacy Tools, Resources for PWS Community
In April 2022, PWSA | USA will host the "Find Your Voice: Advocating for PWS Health Care" webinar series to provide helpful tools and resources on health care advocacy for our PWS community. Because there are very few health care professionals in our communities who have knowledge of the unique health issues of infants, children,...
PWSA | USA CEO Paige Rivard Participating in Webinar Alongside U.S. Representatives Ahead of Rare Disease Day
As the nation gets ready for Rare Disease Day on February 28, 2022, PWSA | USA CEO Paige Rivard will participate in a national webinar hosted by Harmony Biosciences on Thursday, February 24th at 1pm EST to discuss COVID-19 and Rare Disease Patients. Paige will join U.S. Representative Josh Gottheimer (D-NJ), U.S. Representative Brad Wenstrup...
PWSA | USA’s Family Support Team Recaps January, February Community Conversations
January Community Conversation: Guardianship Lisa Thornton is not only a parent of a young woman with PWS, but she is an attorney with a lot of experience navigating guardianship and special needs trusts. If, when, and how to apply for guardianship is often a daunting process for parents. Coupled with every state having different processes,...