Prader-Willi Syndrome Association | USA

A quick message from your #PWSUnitedPodcast hosts, Anne and Carrie! 💜🎧🎙️ Check us out on Podbean: https://lnkd.in/gxxMJNSr #InternationalPodcastDay

Calling all healthcare professionals! 🗣🩺 Join PWSA | USA for TODAY'S (September 30th) ECHO 4 PWS webinar opportunity at 5:00p.m. EST, Cardiac Concerns with James Loker, MD. Register here: https://lnkd.in/gNqw4RDD Dr. Loker will discuss Cardiac disease, which accounts for 16% of all deaths in PWS. He will also share the unique features of PWS that may predispose them to cardiovascular problems. The Cardiac Concerns ECHO webinar is FREE for all healthcare professionals to attend. Dr. Loker's presentation will be followed by a 20-minute case study on PWS. While this ECHO series is only for healthcare professionals to attend, recordings of the webinars will be made available for PWS families on our YouTube ECHO playlist: https://lnkd.in/g_BkM-Tk

Planning for the future can be overwhelming, especially for families navigating the challenges of Prader-Willi syndrome. In our latest video, John Lens, a devoted father and PWSA | USA board member, shares his personal journey and the peace of mind that planned giving has brought to his family. Discover how your legacy can provide hope, support, and resources for generations to come. Watch the video below and learn how you can make a lasting impact through planned giving with PWSA | USA at https://lnkd.in/gACw9JDt. #NationalMakeAWillMonth

Big news! The FDA has accepted Soleno Therapeutics' new drug application (NDA) for DCCR, a drug aimed at treating hyperphagia in people with PWS who are 4 years and older. Even better, the FDA granted Priority Review, which means they see this drug as a potential game-changer for improving the lives of those with PWS. While this is just the first step in the FDA's decision-making process, it's a promising development toward making DCCR available for our loved ones. A final decision is expected by December 27, 2024. Soleno Therapeutics CEO, Dr. Anish Bhatnagar, expressed gratitude to the entire PWS community, including patients, caregivers, and advocacy groups, for their continued support. You can read Soleno's full press release announcement at https://lnkd.in/e2_SpC67.

We are thrilled to announce the upcoming launch of PWS Connect, a brand-new podcast from PWSA | USA, debuting Friday, August 30, 2024! PWS Connect will be your go-to source for the latest news, research, advocacy, and family support in the Prader-Willi syndrome community. This podcast brings together voices from across the PWS landscape, offering valuable insights and practical advice to empower and support those affected by PWS. * On August 30th, check our website, social media, and Special Edition Pulse email newsletter for information on how to listen. Episodes will air every Tuesday and include valuable content to inform, inspire, and empower. We invite you to join us on this new journey!

Exciting News! 📣 On August 2, 2024, the PWS Advocacy Coalition submitted a petition to the FDA for the priority review of Soleno Therapeutics' drug, DCCR. This petition was signed by 14,271 PWS community members! While we expect the FDA to acknowledge the submission, they won't comment publicly due to confidentiality rules. Stay tuned for updates on the DCCR NDA review and decision. Read more and find the petition document at https://lnkd.in/g_tU6Ckz.

Join PWSA | USA and the team from Acadia Pharmaceuticals on Tuesday, July 23 at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the COMPASS PWS Study, which aims to investigate the drug Carbetocin (nasal spray) as a treatment for PWS, specifically to help address hyperphagia symptoms. Acadia representatives will give details about the drug and discuss their Phase 3 study openings, requirements, and more! They will also be available for a Q & A discussion for any questions you have. We invite you to sign up for this free webinar opportunity you won’t want to miss! Register TODAY at https://lnkd.in/gn39PVun.

Exciting Advocacy News! PWSA | USA has submitted our "Congressional Letter of Support" to the FDA with 27 signatures from US Congress members! This letter pushes for urgent development and approval of treatments for Prader-Willi syndrome. A huge THANK YOU to our advocates who shared this ask during the 2024 D.C. Fly-In and to the team leads who worked diligently to follow up with their members of Congress. Your dedication is making a difference. You can read the letter at https://lnkd.in/gVSEze4P. Together, we’re bringing hope and a better quality of life to those affected by PWS. Stay tuned for updates!

We were fortunate to have PWSA | USA's 2024 D.C. Fly-In event captured in a unique and authentic way. Please enjoy this mini-documentary of our time on Capitol Hill, where nearly 150 parents, caregivers, siblings, family members, and individuals living with PWS came together to advocate for our community's needs. We are sincerely grateful to those who stepped in front of the camera lens to share their story. Together, we are driving change and making a lasting impact for those affected by PWS. Thanks to Soleno Therapeutics, Inc. for sponsoring the production of these videos. Produced by Believe Limited: The Patient People.

Join us for the PWS - Aging Research and Health Update Webinar series! 🗓️ Part 1: July 30, 2024, 8 PM EST | Register: https://lnkd.in/gUEagWUt 🗓️ Part 2: August 6, 2024, 8 PM EST | Register: https://lnkd.in/gWmKsHrG Learn about aging in PWS, common health issues, and prevention strategies from experts Lynn Garrick, RN, MSN, and Barb Dorn, RN, BSN. 📌 Topics include: - Dental concerns - Choking - Constipation - Diabetes - Respiratory issues - Weight gain/obesity - Low bone density - Cardiac issues - Mobility challenges - Mental health #PWS #HealthWebinar #AgingResearch