Update: Deadline for signatures EXTENDED to close of business Monday, October 25, 2021 Rep. Gottheimer of New Jersey has drafted and is gathering signatures for a letter to House leadership urging them to oppose the harmful changes to the Orphan Drug Tax Credit. Please consider taking action by clicking the button below. Thank you for...
Category: Awareness
World Osteoporosis Day
Read PWSA | USA Clinical Advisory Board's full Consensus Statement Here. Wednesday, October 20th is recognized as World Osteoporosis Day. Osteoporosis is a condition that commonly impacts individuals living with Prader-Willi syndrome, and is typically diagnosed in adolescence and adulthood. The cause(s) of the osteoporosis is not totally clear, but it is thought to be...
How Can You Make Sure You Are Heard by the FDA?
Would you like to be part of our community-wide effort to advocate for new treatments for PWS? The FDA is now accepting comments from the public regarding a new drug application currently under review for LV-101 (intranasal carbetocin), a potential treatment for PWS. Comments submitted by October 21, 2021, will be reviewed by the FDA...
Webinar Opportunity: Advocating for New Treatment for PWS
When: October 8, 2021 | 11:30 am EST Advocating for treatments for PWS has never been more important! Join this session co-hosted by PWSA | USA and FPWR to learn how you can make the greatest impact with the FDA. It is vital the FDA understand our community’s needs, preferences, and experiences. In this session,...
October is National Physical Therapy Month
October is nationally recognized as Physical Therapy Month. We want to thank the Physical Therapists who help our PWS community and provide care for our loved ones. PTs help address physical, mental, and behavioral challenges while working with those living with PWS. They help each PWS individual reach their greatest potential. Early on, physical therapists...
Better Care Better Jobs Act Obtains more Co-Sponsors
The Better Care Better Jobs Act, HR 4131, just obtained more bipartisan support in the US House of Representatives! We first alerted our community to show their support for this piece of legislation less than a week ago. Since then, Representative Hakeem S. Jeffries, [D-NY-8], Representative Veronica Escobar, [D-TX-16], Representative Cori Bush, [D-MO-1] and Representative...
PWSA | USA Announced as Harmony Biosciences’ 2021 Patients at the Heart Grant Recipient
We are excited to share, on World Narcolepsy Day, that PWSA | USA has been selected as one of Harmony Biosciences' 2021 Patients at the Heart recipients to educate the public on sleep effects in PWS.
Use Your Voice to Save the Orphan Drug Tax Credit!
The orphan drug tax credit is crucial to assist and encourage pharmaceutical companies to develop therapies for rare diseases. Please help us spread the word to lawmakers by clicking on the button below. History An Orphan Drug is a pharmaceutical that is created in order to treat a rare disease. The orphan drug tax credit...
Direct Support Professional Recognition Week
Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion,...
NEW Customizable PWS Health Identification Card!
To help our communities better understand Prader-Willi syndrome, how it affects those diagnosed, and what symptoms require immediate medical attention, PWSA | USA has created a customizable PWS Health Identification Card. This Health ID card can be printed and shared with anyone in your community, e.g. school officials, medical providers, family members, etc. Download the...
Understanding Gastric Motility and Gastroparesis in PWS
Compiled and Reviewed by Barb Dorn, RN, BSN, Margaret Burns, RD, Prader-Willi Homes, and Dr. Ann Scheimann, MD What is Gastric Motility and Gastroparesis? GASTRIC MOTILITY is the rate at which the stomach empties. GASTROPARESIS is slow emptying of the stomach. This condition occurs when there is a delay or slowing in the contraction of...
We Are Brave Together
Founded in 2017 by Jessica Patay, mother to a 18-year-old son with Prader-Willi syndrome, We Are Brave Together (WABT) is a nonprofit organization whose mission is to support caregiving mothers to children, any age, with any diagnosis, disability, or challenge, including learning differences, ADHD, and mental health issues. This international community includes over 1350 moms...
Show Your Support for the STAT Act!
Make your voice heard…STAT! The EveryLife Foundation for Rare Diseases is seeking advocates to share quotes, photos, and/or videos to express their support the Speeding Therapy Access Today Act, or STAT Act. Advocates are encouraged to share how their specific rare disease journey will be positively impacted by a specific aspect of the STAT Act. Please...
Webinar Opportunity: Become an Advocate for PWSA | USA
We are excited to offer a special webinar Thursday, August 26, 2021 at 8:00 p.m. EST on becoming an advocate for PWSA | USA. Advocacy is not just for lobbyists: Anybody can be an effective advocate. Join PWSA | USA and learn how you can help bring PWS awareness to states throughout the country. At...
The BENEFIT Act Receives New Co-Sponsor in U.S. House of Representatives
The BENEFIT Act, HR 4472 / S373, has obtained more bi-partisan support in the US House of Representatives! Representative Doug LaMalfa (R-CA) has signed on to show his continued support for the rare disease community. The BENEFIT Act is a bi-partisan piece of legislation that would require that the FDA disclose whether and how patient...
The BENEFIT Act Receives Bill Number in U.S. House of Representatives
The BENEFIT Act, HR 4472 / S373, has received a bill number in the US House of Representatives! Representative Doris Matsui (D-CA) introduced the BENEFIT Act mid-July, but with a bill number it’s now easier than ever to ask your elected officials to sign on and support this life-changing piece of legislation. The BENEFIT Act...
August is Gastroparesis Awareness Month
August is Gastroparesis Awareness Month. Gastroparesis, also known as delayed gastric emptying, is a chronic condition that affects the stomach muscles and prevents proper movement of food from the stomach to the small intestine.Nearly every person with PWS has some degree of slow gastric emptying. This month, in honor of gastroparesis awareness, we are asking...
The Stat Act Receives More Bi-Partisan Support
The STAT Act, HR 1730, just obtained more bi-partisan support in the US House of Representatives. Representative David Kustoff (R-TN) and Representative Josh Gottheimer, (D-NJ) have joined forces with 19 other US representatives to show their continued support for the rare disease community. The STAT Act will allow patients with a rare disease speedy access...
Webinar Opportunity | Homeschool: What You Should Know
We are excited to offer a special webinar Monday, August 9, 2021 at 7:30 p.m. EST on homeschooling and PWS. The COVID-19 pandemic forced parents to make difficult decisions regarding their children’s education. Join Julie Casey and Danielle Warmuth to learn from veteran homeschoolers about curriculums, services, and socialization. REGISTER IN ADVANCE HERE __________________________________________________________________________________________________________________ ...
One Voice, One Message, One Goal
If you are interested in spreading awareness of PWS, engaging elected officials, and traveling with fellow PWSA | USA supporters, YOUR time has come! PWSA | USA is looking for volunteers from each state to participate in launching a special project to promote PWS awareness throughout the United States. For more information, please contact Dorothea...
PWSA | USA and FPWR Share Combined FDA Patient Listening Session Summary
On June 17, 2021, representatives from PWSA | USA, FPWR and experts in the field of Prader-Willi syndrome research met with the FDA’s Center for Drug Evaluation and Research to discuss issues related to PWS clinical trials. The purpose of this meeting was to promote dialogue between PWSA | USA, FPWR and members of the...
PWSA | USA Advocates for PWS Community During Rare Disease Week on Capitol Hill
This has been an incredible week for PWSA | USA and the rare disease community. In collaboration with RDLA and the Every Life Foundation, PWSA | USA took part in Rare Disease Week on Capitol Hill. We had the opportunity to represent our community and meet with Congressmen Tonko, Delgado, Bacon, and Senators Schumar, Gillibrand,...
Brooklyn’s Story
As told by her mom Lauren When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation. PWSA | USA sent us a packet of information...
Josephine’s Story
As told by her mom, Jennifer The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we...