Family Support Campaign Hub

Family Support is the cornerstone of PWSA | USA.

From those first days in the NICU, finding specialists and deciphering insurance claims, to sending your child off to school, navigating independence and adulthood, and the growing experiences of PWS in the later years of life, we are available every step of the way.  We offer personal family support through our mentoring program, assistance with the IEP process as well as SSI and SSDI claims, trainings for schools and residential providers, connections and information on PWS specific providers, informative webinars, community-engaging conferences, a blog that focuses on the variety of PWS experiences, and a 24-hour crisis hotline. We are honored to be here for your family and the rest of the PWS community. On April 1, 2024, we will begin taking donations for our Family Support Campaign. Please consider making a gift through May 31st so we can continue to be a source of Help and Hope to our community. 

Reasons to Call PWSA | USA

PWSA | USA's Family Support team is here for you and your family 24 hours a day, 7 days a week, 365 days a year. If you are in need of assistance, please call (941) 312-0400 or email

“PWSA | USA was our rainbow after the storm of diagnosis. Providing us with all the latest information available so we can better understand PWS. Knowledge of what is possible is the beginning of a journey filled with hope. PWSA | USA’s family support team came to meet us at the NICU and provided us with support and knowledge of all the things our daughter will and can do. They gave us much needed HOPE. Being a PWS parent doesn’t come with a manual but it comes with the PWSA | USA family support team. PWSA | USA’s family support group helped us find providers in our area. Life sent us on a strong path but also provided us with strong shoes. Walking this PWS journey has not been easy but PWSA | USA’s family support team has been our strong shoes. They walked us through the process of navigating and understanding the entire IEP process.”

– Sue, mom to Shealynn (4) (NJ)



“The PWSA Family Support team has helped us every step of the way! At the beginning, we were reached out to and given so many answers to too many questions to count. Whenever I panic about what is going on with my daughter, they are there to help and make me feel like I am not alone. I am truly blessed for us to have the support that’s there, especially when the rest of the world doesn’t know about PWS.”

– Kebra, mom to Saphira (2) (OH)



“PWSA | USA’s Family Support team gave me two angels on earth as parent mentors who helped me believe it really was going to to be alright. PWSA | USA’s Family Support team helped me feel confident and level-headed in a difficult IEP meeting.”

– Jennifer, mom to Josephine (7) (MN)



“We have always been so thankful for the resources provided by PWSA | USA – the old Gathered View newsletter, the brochures and books, the Medical Alert booklet, and more recently, things like the GI algorithm. The people at PWSA | USA were so helpful when James was initially denied for SS benefits, for example. Practical, useful tools that make such a big difference. Donating is such a small thing that we can do to make sure PWSA | USA is there for other families as well.”

– Elaine, mom to James (37) (NH)



“Our first contact with the Association came at a time of great angst for our entire family. Throughout my 19 year history in various roles with PWSA | USA, I found needed support and a need to “give back” to others some of the gifts afforded to me.”

– Stephen, grandparent to Joslyn (FL)

Your gift to the Family Support Campaign today, means our vital resources will be available in the future for your family, and those who have yet to get their life-changing diagnosis. Together, we can continue to strengthen and grow, and fulfill PWSA | USA’s mission of enhancing the quality of life and empowering those affected by Prader-Willi syndrome.

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