PWSA | USA Presents “Hope for the Holidays” Virtual Concert
FOR IMMEDIATE RELEASE
Sarasota, Florida – Prader-Willi Syndrome Association | USA is thrilled to announce its first-ever benefit concert, Hope for the Holidays. The virtual event premiers on YouTube and Facebook live on December 13, 2020 and will help raise funds for PWSA | USA and the Prader-Willi syndrome community. View the concert promo here.
Headliners include:
- CMA nominee, Ingrid Andress (www. ingridandress.com/ladylike)
- Sarah Marince (https://www.sarahmarince.com/)
- Lauren Marie Mertens (https://apple.co/2KsiaLP)
- Melody Guy (https://melodyguy.com/music)
The concert will be hosted by renowned stadium announcer, Alan Roach, the voice of the Minnesota Vikings, the Colorado Avalanche, and the Colorado Rapids.
The event is brought to the Prader-Willi syndrome community by PWSA | USA and title sponsor Soleno Therapeutics, Inc. Other sponsors include Levo Therapeutics, Inc. and Harmony Biosciences.
“We couldn’t be more excited to bring this special holiday concert to the Prader-Willi syndrome (PWS) community. 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. 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 beauty and peace of the season.”
Hope for the Holidays will be an hour-long performance streamed on Facebook Live and YouTube Premier on Sunday, December 13th at 7:30 PM EST. After the show, the video will be permanently posted on PWSA | USA’s YouTube page. While the concert is free to watch, viewers are encouraged to make a donation through a featured Donate Now button, or by going to https://www.pwsausa.org/hope-for-the-holidays/.
All proceeds will go to PWSA | USA’s 2020 Angel Drive campaign to empower families with round the clock support and life-saving resources, facilitates advancements in treatments and medications, and helps thousands of individuals and families find hope and support when they need it most.
About Prader‐Willi Syndrome Association |USA
Formed in 1975, Prader‐Willi Syndrome Association | USA is a nonprofit organization that unites individuals and families with professionals and organizations to empower those affected by Prader-Willi syndrome. PWSA | USA supports the PWS community by providing education and support, raising awareness, and funding life-changing research.
About Soleno Therapeutics, Inc.
Soleno is focused on the development and commercialization of novel therapeutics for the treatment of rare diseases. The company’s lead candidate, Diazoxide Choline Controlled-Release (DCCR) tablets, a once-daily oral tablet for the treatment of Prader-Willi Syndrome (PWS), is currently being evaluated in a Phase III clinical development program. For more information, please visit www.soleno.life.
About Levo Therapeutics, Inc.
Levo Therapeutics is a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome and related disorders. To learn more about Levo, please visit www.levotx.com.
About Harmony Biosciences
Harmony Biosciences is a commercial stage pharmaceutical company headquartered in Plymouth Meeting, PA and Chicago, IL. The company was established by Paragon Biosciences, LLC, and is focused on providing novel treatment options for people living with rare, neurological disorders who have unmet medical needs. For more information on Harmony Biosciences, please visit the company’s website: www.harmonybiosciences.com.
Media Contact
Rikka Bos
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.