The Prader-Willi Syndrome Association (PWSA) USA announced that this year’s Angel Drive donation campaign – supporting the nonprofit to help people with this complex genetic disease, and in advocating and funding research – will begin November 1.
With chapters in most states in the United States, PWSA USA is the only national organization providing the comprehensive support, tools, and resources that people with Prader-Willi Syndrome (PWS) and their families “need to be healthy.” thrive in the face of a rare genetic disease, ”the association said in its press release.
More than 2,000 patients and families turn to PWSA USA for help each year, the organization noted, and the support provided would not be possible without generous donations from the community.
“We are 100% community backed, so when generous friends like you make your year-end tax deductible donations, you help make people with PWS, their families and caregivers even more possible.” , the association said on the campaign website. .
This year’s Angel Drive campaign will include charitable donations, which can be made here, an online auction (link to come), a PWSA 2022 calendar sale, and a snowflake coloring contest.
Just like patients with PWS, no two snowflakes are the same, the association says, urging everyone to color a snowflake and email it to [email protected] before December 31. The two winners, who will receive a gift card, will be announced on January 7, 2022.
Funds raised during the campaign will help the PWS community by providing direct support to those in need, and by advocating and funding research to improve the lives of people affected by PWS.
PWSA USA’s advocacy plans for next year include meeting with lawmakers to address critical needs – such as recognition of PWS as a permissible condition in many other US states – and a call for treatments. tackling the more difficult aspects of the PWS.
The association also plans to provide free innovative and immersive educational resources on PWS-related sleep disorders to parents, caregivers and healthcare professionals, as well as a “how-to” educational success toolkit for to parents and educators.
A new volunteer board program is expected to be launched next year, along with additional grants to support research applicable to everyday life with the SPW.
“Thank you for your kindness and generosity and for inspiring hope this holiday season! Said Paige Rivard, CEO of PWSA USA and mother of Jake, an 11-year-old boy with PWS.