The content in this preview is based on the last saved version of your email - any changes made to your email that have not been saved will not be shown in this preview.
PWSA | USA
THE PULSE

Vol. 29 | August 13, 2021
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 our PWS community to complete the gastrointestinal history survey in the Global PWS Registry. This survey will ask if your loved one has ever been examined by a gastroenterologist and if they have been diagnosed with any GI issues. Your participation will help us better define GI issues in PWS and how often they typically occur.

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 is a bi-partisan piece of legislation that would require that the FDA disclose whether and how patient experience and/or preference data was used in the benefit risk assessment of a new drug. It will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with FDA to refine the data that they need to make decisions. With everything our community has experienced throughout the last year, we know it's more important than ever to have the FDA consider patient experience as a part of their approval process. Help the voices of our community be heard and encourage your elected officials to co-sponsor this bill today!

Help encourage your elected officials to support the rare disease community by sending a letter of support.
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 Lantz at Advocacy@pwsausa.org for an application.
PWSA | USA Webinar: Homeschool - What You Should Know
If you didn't get a chance to join Monday's Homeschooling Webinar, the recording is now available by clicking the image above. Special thank you to Julie Casey and Danielle Warmuth for sharing helpful information about curriculums, services, and socialization!
Harmony Biosciences recently announced the acquisition of HBS-102, a potential first-in-class molecule with a novel mechanism of action, from ConSynance Therapeutics, Inc. HBS-102 is a Melanin Concentrating Hormone Receptor 1 (MCHR1) antagonist that has the potential to offer a novel approach to the treatment of narcolepsy including the symptoms of Rapid Eye Movement (REM) sleep dysregulation, such as cataplexy, hallucinations and sleep paralysis. Sleep abnormalities, including narcolepsy and cataplexy, are a common feature of Prader-Willi syndrome.


Changes in PWSA | USA Membership
PWSA | USA is continuously looking for ways to be as inclusive as possible for our community, families, and individuals living with PWS. One of the ways this can be accomplished is by revamping our membership criteria. Going forward, we will open our membership up to anyone who shares our mutual interest in helping individuals and families impacted by Prader-Willi syndrome. We will offer our materials and services to all, not just members. With this change, PWSA | USA hopes to expand its community and provide services to a wider range of families and individuals, better serving our mission. We thank you for your support and understanding as we make this transition and ask that you reach out to info@pwsausa.org with any questions you may have.
JOIN OUR TEAM!

PWSA | USA is hiring a full-time Development Specialist. This remote role is responsible for administrative, research, planning, and event support for all fundraising activities that help to sustain our programs to enhance the quality of life of those affected by PWS. For more info and instructions on how to apply, click the button below.
Make a Difference by Becoming a PWSA | USA Volunteer!
Do you want to get more involved with PWSA | USA? We are looking for energetic, passionate individuals to help us carry out our mission and support those affected by PWS. Please click the button below to access our Volunteer Application. If you have any questions, please reach out to
To plan your custom PWSA | USA fundraiser, contact events@pwsausa.org.
Important Message About This Newsletter
The information provided in this email is intended for your general knowledge only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this publication.

Your gift to PWSA | USA ensures individuals and families living with Prader-Willi syndrome have the connection, guidance, and hope they so desperately need. Thank you!