The Prader-Willi Syndrome Association (PWSA) USA, a nonprofit organization that supports education, advocacy, and awareness for those with the complex genetic disorder, announced that it will hold its first benefit concert, “Hope for the Holidays,” on Sunday, Dec. 13, at 7:30 p.m. EST.
“We couldn’t be more excited to bring this special holiday concert to the Prader-Willi syndrome (PWS) community,” the organization’s representatives said in a press release.
“It has been such a difficult year for everyone, and many in the rare disease community have struggled navigating the ‘new normal’ brought about by the global pandemic,” the organizers said.
According to PWSA USA, which also promotes and funds research to improve the quality of life of people with the disorder, Hope for the Holidays will be hosted by sports announcer and radio personality Alan Roach. He is the voice of the Minnesota Vikings, the Colorado Avalanche, and the Colorado Rapids. The one-hour show will include live performances by country singers Ingrid Andress, Sarah Marince, Lauren Marie Mertens, and Melody Guy.
“Our families face extra health and safety concerns, isolation and loneliness, and disruptions in routines and schedules that are especially challenging for children and adults with PWS. The concert is a chance for the entire PWS community to rest and celebrate,” the organizers added.
After the live show, the video will be made available online on the PWSA USA’s YouTube page. Although the concert is free for everyone, viewers are invited to make a donation to the organization. Go here for online giving.
The event will help raise funds for PWSA USA and the PWS community, through the organization’s 2020 Angel Drive. This campaign aims to support individuals and families, as well as to advance treatments and medications for people with PWS. Notably, the PWSA recently announced that it is offering 24-hour family support services to everyone in the PWS community through the end of the year.
The online fundraiser is sponsored by Soleno Therapeutics, which is developing the potential PWS therapy DCCR. Other sponsors are Levo Therapeutics, a company that focuses on new treatments for PWS and the developers of the experimental therapy LV-101, and Harmony Biosciences, which is developing pitolisant as a treatment for excessive daytime sleepiness in PWS.
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