contributed by Kristin McKinney My daughter, Mira, is 12 years old and in our local middle school in Colorado. She got a perfect score on a written spelling bee test at her school that allowed her to qualify to participate at the district level. She was only 1 out of 3 students in the whole...
PWS Mom, Staff Member Melanie McDonald Spreads Awareness Through Local Library Donation
For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather...
Ripple Effect: Advocacy in the PWS Community
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” —The Lorax, Dr. Seuss Contributed by Jennifer Andrews, Advocate and Mom to Josephine A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw...
Pitolisant Receives Orphan Drug Designation
Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS. ...
Neuren Pharmaceuticals Opens Third Trial Site for Phase II PWS Study
Neuren Pharmaceuticals is pleased to announce their third site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Three sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside of Washington, D.C.) and...
Gratitude for Caregivers on National Caregivers Day
National Caregivers Day, the third Friday in February (February 16th), was founded in 2015 by the Providers Association for Home Health and Hospice Agencies. This is a day to recognize caregivers of all types, family, professional, independent, private duty, and informal. We want to first express our gratitude, appreciation, and support for all caregivers. From...
Maintaining Goal Weight
Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the...
Unlocking Potential: Harnessing Strengths to Transform Behavior Webinar
Here is a wonderful opportunity for families to learn valuable knowledge and skills to help assist their loved ones with PWS. On Tuesday, February 27, 5pm Pacific/ 8pm Eastern, Latham Center’s Director of PWS Services, Patrice Carroll, LICSW, will be leading a Family Support Webinar. This webinar will help to define the challenges that lead...
Advocacy in Action Heading to Rare Disease Week
February 29th, Rare Disease Day, is just around the corner! PWSA | USA and PWS advocates will be meeting in Washington, D.C. to make their voices heard at Rare Disease Week. To date, there are over 10,000 rare diseases, 95% of which are without FDA approved treatments. 70% of genetic rare diseases start in childhood...
Empowering Hope: Kayla Day’s Journey as a PWS Advocate
Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS. Contributed by Kayla Day After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The...
Awarding Advocacy
PWSA | USA Spotlight on Hope contributed by Kristi Rickenbach, Mom to Justice Justice, 20 living with PWS, has been a member of the Young Adult Rare Representative (YARR) since January 2023 and recently had the opportunity to learn more about one of the things she is passionate about, Advocacy.The EveryLife Foundation offers a YARR...
Movement and Motivation
We know the importance of exercise for our loved ones with PWS (as well as caregivers if you read last month’s blog on Exercise, Movement, and Mental Health). There are many ways people with PWS can move their bodies to experience the benefits of exercise. Still, sometimes, we have to get creative to get our...
Ask Nurse Lynn: Cataplexy
Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people...
PWSA | USA Now Hiring for Director of Accounting, Development Specialist Positions
Position: Full Time Development SpecialistLocation: Remote Do you have a passion for cultivating relationships and supporting those affected by PWS? Here is your opportunity! PWSA | USA is on the lookout for a dynamic individual to join our growing development team! As the Development Specialist, you’ll play a crucial role in special projects, grassroots support,...
PWS Parenting Hacks
We reached out to our PWS community of parents and caregivers to ask, “What is your PWS Parenting Hack?” Our goal was to gather tips and tools that help parents and caregivers navigate the challenges of PWS. What may seem like a simple tip from one parent could be life changing for another. So, please...
Neuren Pharmaceuticals Opens Second Trial Site for Phase II PWS Study
Neuren Pharmaceuticals is pleased to announce their second site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Two sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside...
PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases
Contributed by Katie Moureau On Wednesday, January 10, 2024, Katie Moureau, mom to a 9-year-old boy with PWS was able advocate in support of Assembly Bill 687 – Authorization of Value-Based Arrangements for Medicaid Programs for all rare diseases. She was one of 2 advocates testify. As we know there are NO FDA approved treatments...
Meditation, Mindfulness, and Self-Care
Contributed by Emily Felt Hi PWSA Community! Every month, I collaborate with the PWSA communications team to contribute ideas that enhance the remarkable ways PWSA educates and supports our community. Like many volunteers, I am also a mother to an adorable 11-year-old girl named Olivia, who is living with PWS. In addition to my volunteer...
When Friends Turn Into Family
Contributed by Jennifer Lloyd When it comes to finding people who understand PWS, it can feel isolating – especially after a new diagnosis. Silas and Nora met at Physical Therapy at a few months old. I remember his PT telling me there was a little girl with PWS that was going there and I knew...
Exercise, Movement, and Mental Health
In the PWS community, we emphasize the importance of exercise and movement as management strategies and life-saving habits for people living with PWS. With the complications of hyperphagia and a slower metabolism, exercise is critical for care. But our loved ones are not alone in this. Physical fitness is incredibly valuable and needed for parents...
2024 D.C. Fly-In Application Now Available!
Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be covering. This year’s event hotel...
Here’s How YOU Can Support PWSA | USA’s Advocacy Initiatives in 2024
We can continue to make our voices and our stories heard through advocacy and community outreach. On January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable...
Introducing the Rare Aware Art Share
We are excited to announce the launch of PWSA | USA’s brand new initiative – The Rare Aware Art Share! This virtual art show aims to spotlight the voices of individuals with Prader-Willi syndrome. We hope to learn more about each individual, their lives, and their experiences as someone with PWS. Our hope is that...
Journaling as Therapy
Receiving a diagnosis of Prader-Willi syndrome can feel isolating and overwhelming. Many of us are thrust into a world we never knew existed. From the start, we are met with statistics and information about genetics, therapies, medications, specialists, nutrition, and futures that seem unfathomable. The tumultuous emotions that accompany this time will likely get shoved...