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...
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...
PWSA | USAโs Board of Directors Transition
Each year the Board of Directors says goodbye to the members whose term expires at the end of August, and welcomes all newly-elected or appointed members whose terms begin on September 1. PWSA |USA congratulates and welcomes incoming Board members who began their 2021-2024 term: Clint Hurdle John Lens Marguerite Rupnow (incumbent) Ann Scheimann, M.D....
Community Conversations Webinar: For Families to Discuss Grief and their Fears for the Future
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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 ESTย 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 communityโs needs, preferences, and experiences. In this session,...
Research Opportunity: Project Pathways
The Learning Lab for Intellectual and Developmental Disabilities at the University of Nebraska โ Lincoln has reached out to us asking for any families interested in participating in a study theyโre currently working on titled, Project Pathways. The purpose of this study is to assess the reading and writing profiles of students with intellectual and...
Donor Spotlight: Steve Leightman
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
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...
Summary of a Streamlined Molecular Diagnostic Approach for Prader-Willi and Other Related Syndromes
Written by: Merlin G. Butler, MD, PhD Historically, to confirm the diagnosis and molecular genetic classes in Prader Willi syndrome (PWS) required a stepwise approach using multiple methods needing more time and resources. Due to advances in genetic testing and availability of multiple analytical methodologies, a streamlined approach was developed and reported by Strom et...
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...
Community Conversation Recap: For Families to Discuss the Impacts of Dr. van Bosse leaving Shrinerโs Hospitals
On Tuesday evening, PWSA | USA hosted a Community Conversation bringing together members of the PWS community to informally share concerns, ideas, and updates on Dr. van Bosseโs recent departure from Shriners Hospitals. PWSA | USA CEO Paige Rivard has spoken directly with Dr. van Bosse who assured her that he remains committed to the...
PWSA | USA Family and Friends: We Need Your Help!
Attention PWSA | USA family and friends! We are working on a special project for our PWS community and are in need of pictures of you and your loved ones. We are creating a PWSA 2022 Calendar, which will be available in the next couple of months, and will include photo collages on each page....
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,...
FDA Advisory Committee to Review LEVO’s Carbetocin as a Treatment for PWS
We are excited to share that Levoโs New Drug Application (NDA) for carbetocin as a treatment for PWS will be discussed at a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held November 4, 2021. This is a major step forward on this drug's path through the approval process. The Food and Drug...
Community Conversation Opportunity: For Families to Discuss the Impacts of Dr. van Bosse leaving Shrinerโs Hospitals
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Soleno Therapeutics Announces Positive Data Showing Continued Significant Improvements in Symptoms of PWS following One Year Treatment with DCCR
(Soleno Therapeutics Press Release) Statistically significant reduction in hyperphagia and all other PWS behavioral parameters in Study C602 Statistically significant improvements compared to natural history of PWS from the PATH for PWS Study On track for data submission to the FDA in Q3 2021 REDWOOD CITY, Calif., Sept. 08, 2021 (GLOBE NEWSWIRE) -- Soleno Therapeutics,...
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...
Creating Your Childโs Special Education File
Creating a master file that contains the enormous amount of paperwork your child with special education needs will not only keep you organized and aid you in preparing for all interactions with the school district but will give you a clearer understanding of your childโs special education needs and progress. Schools often keep records in...
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.ย This condition occurs when there is a delay or slowing in the contraction of...
A Message from PWSA | USA’s CEO Paige Rivard Regarding Dr. van Bosse
A message from PWSA | USAโs CEO Paige Rivard: As many of you have heard, Dr. Harold van Bosse is no longer with Shriners Hospitals for Children in Philadelphia. I was in contact with Dr. van Bosse who said he is in the process of moving his practice and is still very committed to the...
We Are Brave Together
Founded in 2017 by Jessica Patay, โmother 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...