Due to technical issues, we were forced to reschedule our May Advocacy in Action webinar featuring Rachel Derby with Patients Rising for June 8, 2022 at 8:00 p.m. EST. We apologize for any inconvenience this may have caused, but we’re looking forward to seeing all of you who can attend!
A Look into AME Community Services’ Minnesota Prader-Willi Group Home
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW and Medical/Research Coordinator Lynn Garrick, RN AME Community Services, Inc in Hastings, Minnesota is a company committed to supporting individuals with disabilities to achieve their goals, big or small. AME currently has 11 Prader-Willi Syndrome specific group homes, which are licensed through...
Early Intervention: IDEA Part C
Contributed by PWSA | USA's Family Support Director Stacy Ward PWSA | USA often receives questions about early intervention, the difference between Individualized Education Programs and Individual Family Support Plans, and how to qualify for each from parents. Part C (Early Intervention) of the Individuals with Disabilities Education Act (IDEA) was established in 1986 by...
2022 PWSA | USA Volunteer Summit Recap
Contributed by PWSA | USA Community Engagement Coordinator Dorothea Lantz If there is one word to describe the events of PWSA | USA’s first ever Volunteer Summit in Dallas, it would be magical. We had more than 30 of our dedicated volunteers in attendance for a Saturday filled with hope and ideas on how to...
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...
PWSA | USA is Getting Ready for our First Annual Volunteer Summit
PWSA | USA staff members are putting the final preparations together for the organization's first-ever Volunteer Summit, which will be held April 29, 2022 - May 1, 2022 in Dallas, TX. We are looking forward to welcoming many of our dedicated volunteers! At this time, we are no longer accepting new attendees, but be on...
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...
Clinical Trial Sites Announced for Radius Health’s RAD011 SCOUT-015 Study
Radius Health has announced the locations for its RAD011 SCOUT-015 Clinical Trials. Below, you will find a downloadable map with each participating hospital and medical center around the country. The RAD011 SCOUT-015 studies are in various stages, depending on the location, from initiated to activated and ready to enroll. You can also find a comprehensive...
April Advocacy in Action Webinar will Feature Guest Speakers from the FDA
SAVE THE DATE – APRIL 27, 2022 Time: TBD Registration Link Coming Soon! Advocacy in Action presents… Engaging with the FDA: Opportunities and Boundaries As our community continues down the ever-evolving road of drug trials to enhance the lives of those who have PWS, PWSA | USA would like you to join us as we bring...
Saniona Pausing All Clinical Trials for PWS Drug Tesomet Due to Funding Limitations
This morning, Saniona announced they will be voluntarily pausing all Phase 2b Clinical Trials for the drug Tesomet, which is being studied as a treatment for Prader-Willi syndrome (PWS). Saniona has explained that this pause is due to funding limitations and has nothing to do with the "safety or efficacy" of the drug itself. PWSA...
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...
Texas Prader-Willi Association Opens New PWS Group Home
While the world and our Prader-Willi syndrome (PWS) community have been dealing with the pandemic's unpredictable circumstances, specifically the many obstacles to find appropriate supported living, the Texas Prader-Willi Association has managed to open a new PWS specific group home. The Texas Prader-Willi Association purchased and renovated a three-bedroom house to serve as a PWS...
What Type of Research Matters to You?
For more than 40 years, PWSA | USA has played a critical role in sponsoring and advancing research for the benefit of our PWS community. We are excited to continue this important commitment to PWS research in ways you have always relied on (organizing scientific conferences, offering grants to clinicians, etc.). We are also eager...
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...
PWSA | USA’s 2021 Annual Report
Dear friends, On behalf of PWSA | USA's Board of Directors and Staff, we are sincerely grateful for YOU, our PWS community, for coming together in advocacy, family support, and research over the past year. We would not be able to offer the resources, care, and hope to our families and individuals living with PWS...
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,...
Thank You for Shining a Light on Rare Disease Day!
Thank you to our PWS community for helping us shine a light on Rare Disease Day! This year, the National Organization for Rare Disorders (NORD) focused on encouraging buildings, landmarks, and monuments around the world to participate in a chain of lights to recognize Rare Disease Day. We are excited to share that many buildings/landmarks/monuments...
Help PWS experts learn more about feeding tube use in PWS
The information below was provided by the Global PWS Registry --------------------------------------------------------------------------------------- We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth. If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new...
Global PWS Registry Shares Latest Orthopedic Data for Individuals Living with PWS
The information below was provided by the Global PWS Registry and approved by the Institutional Review Board (IRB) -------------------------------------------------------------------------------------------- Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and/or surgery for spinal issues....
Thank you for Sharing your Rare!
Thank you to those who shared their rare to help shine a light on Rare Disease Day!
My Brother Daniel
Written by Daniel's Sister _________________________________________________________________________________ My brother, Daniel, was born in 1956, the same year that PWS was formally identified but he was not diagnosed until he was sixteen. Our family, (two parents, Daniel, and his four sisters) moved around a lot — from the U.S. to Chile, France, Canada and Venezuela—eventually settling in the...