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. 28 | August 6, 2021
FREE VIRTUAL EVENT YOU DON'T WANT TO MISS!

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 curricula, services, and socialization.
Julie Casey
 
Julie Casey has been homeschooling her 17-year-old son Ryan (PWS) for the last 11 years. This September, she will begin her 12th year with Ryan as a High School Senior. Before becoming a stay-at-home mom, Julie, who holds a BA in Behavioral Sciences and a MA in Organizational Management, worked in the Insurance and Risk Management Industry. Shortly after Ryan was born in 2004, Julie got involved with both PWSA | USA and PWCF. She is a past Board President for PWCF and remains on their Fund Development Committee. Julie is a member of the PWSA | USA Communications and Editorial Committee, the Chapter Relations Committee, and is a Parent Mentor.
Danielle Warmuth
 
Danielle Warmuth has been homeschooling for 21 years and has three children, ages 30, 27, and Andrew, age 14 (PWS). She served as Secretary for the Prader-Willi syndrome, Indiana Chapter for 10 years. She is a multidisciplinary major in International Studies from Michigan State University, holds minors in Earth Sciences, Archaeology, and Anthropology, and speaks French and Japanese. Danielle retired from the airlines in 2012 to stay home with Andrew. Together, they co-author the website Moving Mountains Daily. It was a homeschool project that grew way beyond what they intended! Outside the classroom, exercise and life adventures are a big part of their school day. Experiences like hospital stays, learning to pump gas, scouting, living with the nomads in Mongolia, or watching a flatboat navigate the Ohio River locks all count as “school.” Their family life motto is “Progress not Perfection.”
The STAT Act, HR 1730 / S 670, 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 to therapies, inform rare disease policies and actions by creating a Rare Disease and Condition Drug Advisory Committee and fund regulatory science and related activities to support the development of therapies to treat rare disease populations.

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.
Whether it is a compassionate call of support after your child’s diagnosis, or a resource-filled consultation when your loved one is entering a new phase of development, PWSA | USA is here for you and your family 24 hours a day, 7 days a week, 365 days a year.
Harmony Biosciences adds Cincinnati, OH site to its
Phase 2 Clinical Trial
Harmony Biosciences is currently in its Phase 2 clinical trial of Pitolisant, studying the safety and impact of an investigational medicine for excessive daytime sleepiness, cognition, and behavioral function in people with PWS. This week, they added an 11th location to their list of trial sites around the U.S. The trial site will be located at CTI Clinical Trial and Consulting Services, Inc. in Cincinnati, OH and will be led by Dr. James Maynard, who is board certified in both neurology and sleep medicine.

Participation in the trial lasts approximately four months. During that time, there are five planned visits.

Read more here.
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
A reminder that our 2021 Virtual Convention Session Recordings are available on PWSA | USA's Website! Click the button below to access the videos.
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!