Celebrating our Journey of Hope! Join us as we usher in PWSA | USA’s 50th Anniversary. Learn More

Family Support

Your Partners in Hope

PWSA | USA’s Family Support team members are here to help.

We provide guidance and support to individuals diagnosed with Prader-Willi syndrome, their families, and care providers. The team provides education and training to medical providers, educators, and professional care givers about the syndrome, and advocates for the comprehensive needs of the entire PWS community.

If you have a child who has recently been diagnosed with Prader-Willi syndrome, please fill out our New Diagnosis Form.

How We Support PWS Families

Provider Training

Educating Healthcare Professionals

We offer specialized training programs for healthcare providers to enhance their understanding and treatment of Prader-Willi Syndrome.

Family Support Groups

Building a Supportive Community

Join our network to connect with other families navigating Prader-Willi Syndrome, sharing experiences, tips, and emotional support.

School Success

Diligence and Active Participation

Whether it is in the classroom or at home, school can come with many challenges for the PWS community. We encourage our families to utilize PWSA | USA’s Tips for School Success Toolkits! Explore six school success toolkits that share how your child can be successful while navigating learning – whether it’s at home or in the classroom.

Nutrition Guidance

Weight Management Strategies & Support

Access expert advice on managing dietary needs specific to PWS, including tailored nutrition plans and resources for healthy living.

Behavior Support

Managing Unique
Challenges

Receive guidance on behavioral strategies and interventions that are effective in addressing the unique behavioral aspects of PWS.

Financial Support

Assistance for Care and Resources

Explore various financial aid options available to families for managing the costs associated with the care and support of loved ones with PWS.

Legal Support

Navigating Legal and Advocacy Issues

Gain access to legal resources and advocacy support tailored to address the unique challenges faced by families dealing with PWS.

Clinical Trials

Advancing PWS Research and Treatment

Stay informed about the latest clinical trials for Prader-Willi Syndrome, offering opportunities to contribute to groundbreaking research and access new treatments.

Community Events

Empowering Our
Community

Participate in a variety of events that bring together the PWS community for support, education, and advocacy, fostering a sense of solidarity and shared purpose.

Family Mentor Program

The PWSA | USA Family Mentor Program supports families of children newly diagnosed with Prader-Willi syndrome. Parents, grandparents, and siblings often feel a mix of intense emotions. Mentors, who have been through similar experiences, help new families navigate this challenging time by offering empathetic listening and sharing their experiences. The program empowers families to make their own decisions and provides support throughout their journey. It benefits both mentees and mentors, giving mentors a sense of purpose and fulfillment. Interested in becoming a family mentor? If you’re interested in becoming a family mentor, contact us at info@pwsausa.org.

Grief Counseling

PWSA | USA’s grief counselor, Kim Tula, MS, CSW, provides grief counseling and emotional support to members of the PWS community. It is not uncommon for people with PWS and their family members to experience grief throughout different stages of life. Grief can also come in many forms. It could be from the loss of a loved one or through disenfranchised grief. Examples of disenfranchised grief can include feelings of loss associated with living with PWS, loss of freedom or independence, not reaching personal goals, the inability to have a family, or not being able to own or drive a car. Whether you are a family member or an individual living with PWS experiencing grief of any kind, we are here for you. Contact us at info@pwsausa.org or call (941) 312-0400.

Need immediate support?

Call our 24-hour support line: 941-312-0400

PWSA | USA’s 24-Hour Support Phone Line is available 24-hours every day, 365 days a year. Our knowledgeable and resourceful Family Support team members can help answer questions, offer guidance, or simply be there to talk. This support line is also open and available during any holidays where PWSA | USA is closed. In addition, you can reach out to us via email at info@pwsausa.org. We are here for YOU!

PWSA | USA Support Groups

PWSA | USA Facebook Support Groups are safe, secure spaces for connecting with other families to share personal experiences and to learn from one another; all of the groups are “private” meaning only members can see who’s in the group and what they post. All of the support groups are moderated by PWSA | USA staff, however, the information provided in these groups is intended for your general knowledge only and is not intended to be a substitute for professional medical advice, diagnosis or treatment.
Contact us today to be added to one of our Facebook Support Groups.

Visit our Blog

Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US

Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US

Aardvark Therapeutics recently launched HERO, a global Phase 3 randomized, double-blind, placebo-controlled clinical trial of ARD-101. ARD-101 is a novel, orally administered investigational therapy being studied to see if it can reduce excessive hunger and food-seeking behaviors in individuals with PWS. About the HERO Trial As part of the HERO study, participants will be randomly […]

Spotlight on Hope: Lydia and Dalyas Dreamers

Spotlight on Hope: Lydia and Dalyas Dreamers

PWS Mom Jamie Caldwell, has found a unique way to celebrate her daughter, Lydia (3, living with PWS) and PWS Awareness Month.  “We started working with this project after Kristina (Rieger), owner/founder of Dalya’s Dreamers, had posted in our local special needs mom group seeking models of her dresses. As a mother with a daughter […]

Spotlight on Hope: Mastering Karate with Cameron

Spotlight on Hope: Mastering Karate with Cameron

submitted by Lisa Graziano, proud mom to Cameron (26, living with PWS) Cameron Graziano, age 26 with PWS deletion subtype, earned his Black Belt in Tae Kwon Do when he was 17 years old. His passion for Karate started at age 9 when his ability to balance on one foot did not exceed a count […]

Scroll to top