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...
Category: Awareness
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...
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...
Celebrate Holidays Safely
by Katherine Crawford, former PWCF Family Support Coordinator; Updated by Lisa Graziano, M.A., PWCF Education and Training Consultant Holidays are a time for gathering, connecting, and celebrating – but are also typically centered on food, which often places enormous stressors on families of a child or adult with PWS. We hope the following tips make your...
December has Been Another Exciting Month for PWS Advocacy!
On December 6, 2023, Director of Community Engagement Dorothea Lantz was the keynote and opening speaker for the first annual Rare Conversations. This rare disease policy forum was organized by Alexion AstraZeneca Rare Disease and focused on how to advance the needs of people living with rare disease and their caregivers by working with state...
Supporting the Community Through Training
Contributed by Kim Tula PWSA | USA supports the PWS community in a multitude of ways. This includes providing training to residential home and school staff. These trainings are an essential component of educating schools, homes, and providers to help our loved ones live safer, healthier lives. Kim Tula is our Alterman Family Support Counselor....
Locking the Fridge, Community Stories
Contributed by Anne Fricke We finally locked the refrigerator! I did not expect my daughter’s reaction. Freya is 12, living with PWS, and while food seeking has not been a big challenge in our lives, it was starting to creep in. For the past few years, we’ve managed by ensuring we put leftovers away shortly after meals....
Joint Legislation Filed to have PWS Recognized as a Developmental Disability in Ohio
PWSA | USA is excited to announce that thanks to the dedication and hard work of our Advocacy Ambassador, Dr. Erin Carter-Cooper, PhD, Ohio Representative Rose Sweeney (D - District 16) and Representative Gayle Mannin (R – District 52) have jointly filed legislation that will make Prader-Willi syndrome a recognized developmental disability in the State of Ohio!...
2024 DC Fly-In Hotel Announcement and Application Release Date
We are excited to share PWSA | USA's 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During the Fly-In, we will learn about Policy affecting the PWS community, hear from policy makers, and continue our...
New PWS Children’s Book Now Available for Pre-Sale!
We are excited to share that a new children's book centered around PWS is now available to pre-order! It Starts with Hello: Katie's Story about Prader-Willi Syndrome was written by Destiny Pacha, Ed.D., who has worked in the public education system for more than 20 years. The story follows Katie and her companions as they...
Spotlight on Hope: I AM Jacob Zavitz
Contributed by Dan Yashinsky Our son Jacob, at age six-and-a-half, said to me once: “Could you get me paper? I’m going to write about superheroes.” Jacob Evan Yashinsky-Zavitz was, himself, as close to a superhero as I’ll ever know. He lived with PWS, and as all the readers of PWSA | USA's Pulse newsletter know,...
PWSA | USA Announced as Harmony Biosciences’ 2023 Patients at the Heart Grant Recipient
About Harmony Biosciences Patients at the Heart Grant Via Harmony Biosciences Press Release: Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases, has selected the latest round of nonprofit organizations for its Patients at the Heart and Progress at the Heart...
PWSA | USA Advocates will Participate in Groundbreaking Opportunity for PWS Community!
U.S. Senate Committee Hearing Live Broadcast Link Now Available This Thursday, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26, 2023, our advocates will be present for a press conference on Capitol Hill, hosted by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Representative Mike Gallagher (R-WI),...
PWSA | USA Volunteer Advocates Jen Garzia and Charles Conway Jr. Share Presentations at Harmony Biosciences Conference
On Monday, October 16 & 17, Harmony Biosciences hosted an annual all-employee meeting in Philadelphia, Pennsylvania. Charles Conway Jr. and Jennifer Garzia, PWS parents to Angelica (3) and Rocco (19), were invited to participate in a panel discussion: Delayed, but not Denied: Perspectives on Caregiving. The title and theme of the talk, Delayed, but not...
Freya’s Spotlight on Hope: The Climb
Contributed by Anne Fricke, mom to Freya, living with PWS Freya’s 6th grade class started the year studying volcanoes. Part of the learning experience was to travel to Lassen Volcanic National Park for a 5-day camping trip with arduous hikes and days full of activity. To say I had concerns is an understatement, but she...
Joint Announcement: FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS
PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created...
Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome
Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of DCCR (Diazoxide Choline) Extended-Release tablets for Prader-Willi syndrome (PWS). The results, which showed a significant improvement in hyperphagia-related behaviors in the DCCR group compared to the placebo group, support Soleno's plan to submit a New...
Transformative Tales: Empowering Families Dealing with Prader-Willi Syndrome Through Food Security
Contributed by Christopher Rich, Utah PWS Association Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those...
Get to Know PWSA Egypt and Middle East!
Individuals and families affected by PWS who are living in Egypt and the Middle East now have an established community to find help and hope. PWSA Egypt and Middle East was officially founded on June 1, 2023 by Walaa Mohamed, mom to Ahmed, 13, living with PWS. PWSA Egypt & Middle East will serve the...
How Utah is Enhancing Food Security for Prader-Willi Syndrome Individuals: 2023 PWS National Convention
Contributed by Christopher Rich, Utah PWS Association Among the exhibitors at this year's PWSA | USA National Convention was the Utah PWS Association, which focused on food security and its role in managing PWS symptoms. The exhibition booth showcased practical strategies and innovative solutions to create a controlled environment, emphasizing the importance of food security...
Spotlight on Advocacy: PWS Advocate Erin Cooper Carter, PhD Continues to Fight for our Ohio Families!
Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64). When asked...