Prader-Willi Association of New England

Directions Website

Prader-Willi Association of New England PWS is a non-inherited genetic disorder which is most often associated with a random deletion of the 15th chromosome. It is truly appreciated.

It affects both sexes and is unrelated to race. The cause is, as yet, unknown.http://pwsane.org The PWSANE Board members are working hard to keep the momentum from the National PWS conference going! We have a vibrant chapter who came together to help make the diagnosis of Prader-Willi Syndrome a qualifying event for adult services. We have also been successful in having PWS specific group homes built as the need for specialized housing is critical in the safety, well-being and independence of our loved ones with this syndrome. PWS can be isolating for the both the individual and family. We have sponsored many social events to bring our community together, including kayaking, dances, rock climbing, painting event, and sibling workshops. We would like to thank the generous people who donate to PWSANE. Complex genetic disorder of the 15th chromosome; the most common known genetic cause of life-threatening obesity in children. PWS is a spectrum disorder and an individual may not necessarily present with all of the issues that are common to the syndrome. Typically causes:

Low muscle tone
Short stature
Incomplete sexual development
Cognitive disabilities
Problem behaviors
Chronic feeling of hunger

10/28/2026
10/23/2026

Exciting clinical trials news for the PWS community! The FDA has lifted the clinical hold on ARD-101, Aardvark Therapeutics’ investigational treatment for hyperphagia in Prader-Willi syndrome.

According to their press release announcement, Aardvark plans to resume clinical development of ARD-101 in patients with PWS following additional anticipated engagement and alignment with the FDA on the Phase 3 trial design.

Aardvark is hosting a webcast tomorrow, October 23, at 8:00 AM ET to discuss the update and data from the HERO trial. It’s designed mainly for the investment community, but PWS families are welcome to join or watch the replay. Find details on the Events page of Aardvark’s Investor Relations website: https://ir.aardvarktherapeutics.com/news-events/events

Read Aardvark's full press release: https://ir.aardvarktherapeutics.com/news-releases/news-release-details/aardvark-therapeutics-announces-fda-has-lifted-clinical-hold-ard

Reminder the conference will be here in 5 weeks!
10/10/2026

Reminder the conference will be here in 5 weeks!

08/30/2026

PWS families and supporters in Massachusetts! ⛳✨

Join the Lens family on Saturday, September 19, 2026, at the Heritage Hills Golf Club in Lakeville, MA, for a day of golf, good spirits, and great friends. The Hunter Lens Golf Tournament is celebrating its 17th year raising critical funds for PWSA | USA.

"Hunter Lens is 28 years old and lives with Prader-Willi syndrome. He leads a happy, active life despite his daily challenges. He has friends, a loving family and his weight is under control. Supporting PWSA | USA will open more doors for Hunter and others who live with PWS, which ultimately means a better life. Hunter deserves a better life. Please join us on this special day in honor of Hunter to benefit PWSA | USA’s mission." - John Lens, dad to Hunter

Learn more and purchase tickets: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873

08/12/2026

PWSA | USA, FPWR, and IPWSO have jointly released a new Clinician Statement on VYKAT XR (diazoxide choline), with versions written specifically for caregivers and for healthcare professionals.

Since VYKAT XR became more widely available, some adverse events have been reported, including edema, respiratory complications, and cardiac complications. These reports don't establish that VYKAT XR caused these outcomes, but they do call for informed prescribing, careful patient selection, and close monitoring. We're also re-sharing our VYKAT XR Parent FAQ to help families navigate common questions on effectiveness, side effects, dosing, and more.

Our CEO Stacy Ward shares more context in a new blog article, which you can read at https://www.pwsausa.org/pws-organizations-share-joint-statement-on-vykat-xr-adverse-events-resources-for-providers-and-caregivers/. There, you will also find the downloadable joint statements and FAQ for parents.

07/26/2026

Today marks the 36th Anniversary of the Americans with Disabilities Act (ADA), the landmark civil rights law that transformed our nation by affirming that people with disabilities have the right to live, work, learn, and participate fully in their communities.

The ADA changed countless lives, but its promise remains unfinished.

Disability rights are currently threatened by proposed cuts to Medicaid and other essential services that make community living possible. Civil rights require more than laws on the books. They require sustained investment, strong enforcement, and a commitment to ensuring every person has the support they need to thrive.

At The Arc of Massachusetts, we remain committed to protecting the rights guaranteed by the ADA while advocating for policies that expand opportunity, strengthen community-based supports, and ensure that people with disabilities are included in every decision that affects their lives.

Today, we celebrate the progress made over the last 36 years and recommit ourselves to the work that lies ahead. Disability rights are human rights, and the fight for equity, accessibility, and inclusion continues.

Thanks to the Atwoods for hosting us, rain and all! Nice to get together with some families, always a great time!
07/19/2026

Thanks to the Atwoods for hosting us, rain and all! Nice to get together with some families, always a great time!

07/15/2026

Reminder about the upcoming pool party!

07/07/2026

PWS families and supporters in Massachusetts! Join the Lens family on Saturday, September 19, 2026, at the Heritage Hills Golf Club in Lakeville, MA, for a day of golf, good spirits, and great friends. The Hunter Lens Golf Tournament is celebrating its 17th year raising critical funds for PWSA | USA.

"Hunter Lens is 28 years old and lives with Prader-Willi syndrome. He leads a happy, active life despite his daily challenges. He has friends, a loving family and his weight is under control. Supporting PWSA | USA will open more doors for Hunter and others who live with PWS, which ultimately means a better life. Hunter deserves a better life. Please join us on this special day in honor of Hunter to benefit PWSA | USA’s mission." - John Lens, dad to Hunter

Purchase tickets: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873

Address

27 Westward CIR
North Reading, MA
01864

Website

Alerts

Be the first to know and let us send you an email when Prader-Willi Association of New England posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category

Nearby non profit organizations