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PWSA Blog

SIGNATURE EXTENSION: Encourage your Congressman to sign Rep. Gottheimer’s letter urging House leadership to oppose the harmful changes to the ODTC!

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...

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 theyโ€™re 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...

Community Conversation Recap: For Families to Discuss the Impacts of Dr. van Bosse leaving Shrinerโ€™s 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 Bosseโ€™s 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...

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,...

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...

We Are Brave Together

Founded in 2017 by Jessica Patay, โ€‹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...

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