The Walk and Roll for PWS joins the Denise D'Ascenzo Walk to Fight Rare Diseases
We have been thrilled to join the Denise D'Ascenzo Walk to Fight Rare Diseases at Quinnipiac University for the last three years. We hope you will join us next year!
News & Events
Stay up to date with the latest news, events, and announcements from PWS Families United.
2020 Walk and Roll for PWS – Our 10th Anniversary
Mark your calendars!! Saturday, May 30th 2020 will be our tenth annual Walk and Roll for PWS. Even more exciting than that anniversary, is that the walk will be held in a very special location, The Beardsley Zoo!! We hope to see you all there!!
2019 Walk and Roll for PWS
Our ninth annual Walk and Roll for PWS is set to get underway! Please join us on Saturday, June 15th!! Register or donate to support the walk.
PWS Educational Conference – June 1st in Glastonbury, CT
SAVE the DATE — PWS Conference: Prader-Willi Syndrome: A Bright Future. Hosted by Latham Centers and Mac Pact. Hilton Garden Inn Hartford South/Glastonbury CT. Saturday, June 1, 2019, 9am–4pm, followed by a cocktail reception.
2018 Walk and Roll for PWS
Join us on Saturday, June 16th at Coginchaug Regional High School for our eighth annual Walk and Roll for PWS!! We hope to see you all there!
2017 Walk and Roll for PWS
This past year saw a new venue for our Walk and Roll at Coginchaug High School in Durham, CT. As always, we had a wonderful turnout and had a fantastic morning surrounded by our amazingly supportive families and friends.
First Conference a Huge Success
This past April, the Mac Pact and PWS Families United hosted an amazing conference featuring some of the leading experts in the field of Prader-Willi Syndrome, including Dr. Jennifer Miller, Elizabeth Roof of the Vanderbilt Kennedy Center, and Hannah Stahmer.
Join us for our first Parent/Caregiver Support Meeting
Join us on Thursday, February 2nd from 5:30 to 7:00 at the Clifford Beers Clinic for our first Parent/Caregiver Support Meeting. Come meet old friends, make new ones, and take some time to feel supported. 93 Edwards Street, New Haven. Light refreshments will be served.
Join us at Panera!
On Wednesday April 6th, Panera Bread at 2100 Dixwell Avenue in Hamden CT will be holding a Fundraising Night for PWS Families United! Come out between 4:00 pm and 8:00 pm and bring a copy of our flyer. Enjoy a delicious meal and help us raise funding.
Why We Love Dr. Miller!!
On October 29th, 2015, the incomparable Dr. Miller presented a 30 minute webinar on supplements to help support our loved ones with PWS. She also touched upon certain medications that she prescribes to help with daytime sleepiness which can help mediate certain related behaviors.
Promising Results from Clinical Trial at UFL
TREND and PWSA (USA) are excited to support Drs. Jennifer Miller and Dan Driscoll in their endeavor to gain FDA approval to make oxytocin a standard of care for Prader-Willi syndrome (PWS).
“Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid.”
― Albert Einstein
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