Prader-Willi Alliance of NY, Inc.

07/05/2025

Even when its a Mini-Conference, the opportunity to come together is always an incredible experience! It felt like PWANY managed to pack so much into a few short hours: family networking, hearing about newly approved treatments and ongoing clinical trials, learning from specialists in their fields, and growing vision for advocacy. I am so grateful for the families and presenters that attended, our strong collaboration with PWSAUSA, and our amazing sponsors (Aardvark, Acadia, Harmony, Soleno, and Danielle Angiolillo). I also need to give a shout-out to PWANY's event planning committee, who is using the momentum from the Mini-Conference to start planning for a bigger event in the spring of 2026!

If you attended the Mini-Conference (or are thinking about attending next year's event), PWANY's event planning committee would love to hear from you! Please take a moment to share your thoughts on the following Google form- we welcome your feedback!!!

https://docs.google.com/forms/d/e/1FAIpQLSfW0OhCZcT2PYAYnjq7oSXvtvYrrh7UaqhRPOqPwqY3YZjWlg/viewform?usp=sharing

30/04/2025

Only a couple of days left before we start Prader-Willi Awareness Month by hosting NY's Mini-Conference! I am especially excited to share that not only will we be able to hear from representatives from Soleno (VYKAT), we will also be welcoming representatives of several ongoing clinical trials: Acadia (Carbetocin), Aardvark (ARD-101), and Harmony (TEMPO).
Online registration may be closed, but we still welcome attendees and actually have a few wristbands for Huck Finn's! Fees could be paid in person at the registration table Friday night or Saturday morning. Please email us at alliance@prader-willi.org with your name, number of adult attendees, if you have a loved one who will participate in the Activity Room, and requested number of wristbands for Huck Finn's. Unfortunately, the hotel block is sold out, but we could offer suggestions for other hotels in the area if needed. Hope to see you there!

22/04/2025

There’s still time to register for this important Q&A session about VYKAT tonight!

Join PWSA | USA and FPWR for a PWS Community Town Hall: Sharing Experiences with VYKAT XR
When: Tuesday, April 22, 2025 | 9:00 PM ET / 6:00 PM PT
Register: https://us02web.zoom.us/meeting/register/CrvkxauyScaGy7ZVWAVwcw #/registration

The PWS community is invited to a virtual town hall focused on VYKAT XR, the first FDA-approved medication for treating hyperphagia in individuals with Prader-Willi syndrome (PWS) ages 4 and older. This informal, community-led town hall is a no-host forum designed for families and caregivers to share their personal experiences with VYKAT XR, ask questions, and learn from one another.

Please note: This session is intended for peer-to-peer discussion. Medical advice will not be provided.

This town hall is intended for U.S.-based caregivers of individuals with Prader-Willi syndrome. PWSA | USA and FPWR will verify all registrants to confirm caregiver status to ensure a safe and supportive environment. Registration will only be approved once verification is complete.

For the privacy of our attendees, the town hall will not be recorded.

28/03/2025

Registration is NOW OPEN for Soleno Therapeutics & MedLive’s free, live webinar on April 16th at 9:15 AM PT / 12:15 PM ET!
Link: www.medlive.com/v/PWScommunity

We highly encourage everyone in the PWS community to attend this virtual event to learn more about VYKAT XR (formerly known as DCCR) and how it addresses hyperphagia in individuals with Prader-Willi syndrome. If you are unable to make it, the webinar will be recorded.

What You’ll Learn:
- How VYKAT XR helps manage hyperphagia as the first and only FDA-approved treatment
- A caregiver’s firsthand experience with VYKAT XR
- How to get started with treatment

Download the webinar flyer:https://www.pwsausa.org/wp-content/uploads/2025/03/Medlive-Soleno-Vykat-XR-Patient-CG-Live-Broadcast-Digital-Flyer.pdf

27/03/2025

BREAKING NEWS: A Historic Moment for the PWS Community!
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The FDA has officially approved VYKAT™ XR (diazoxide choline extended-release tablets, formerly referred to as DCCR) as the first-ever treatment for hyperphagia in Prader-Willi syndrome! 🎉 This is a monumental victory for individuals with PWS, their families, and the entire rare disease community.
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To learn more, read Soleno's press release: https://investors.soleno.life/news-releases/news-release-details/soleno-therapeutics-announces-us-fda-approval-vykattm-xr-treat
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We know many of you have questions, and we encourage the PWS community to refer to Soleno’s website for the most up-to-date information. We will also share more details soon about an upcoming webinar on April 16, which will be hosted by Soleno - stay tuned!
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https://www.pwsausa.org/pws-breaking-news-fda-approves-first-ever-treatment-for-hyperphagia-in-pws/
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For now, let’s celebrate this incredible milestone together. 💙

18/03/2025

For our NY Families! Friendly reminder of our PWS Support group TONIGHT! :)
Prader-Willi Syndrome Support Group

Please email Nina at: niroberto69@gmail.com for link.

March 18, 2025 @ 7:00 pm

Topic: Young Adult Transitioning

Presented by:

Elizabeth Roof, M.A., H.S.P

Senior Research Specialist

Vanderbilt University

Meeting will be held virtually via Zoom!

Upcoming speakers:

4/9/2025: *Note: a Wednesday* Miriam Hurwitz- Attorney NY Legal Group- Social Security


This group is designed to bring together families of individuals with PWS for support. We offer a variety of speakers and welcome your input on topics you'd like to discuss.

Meetings are organized by:
Lori Benzoni, MPH, Program and Event Specialist from NYU Langone Hospital -- Long Island & Nina Roberto, Director of Family Support Prader-Willi Alliance of NY, Inc & Family Support Services Coordinator, Catholic Charities Disabilities Services.

14/03/2025

New York families,
One of our own is hosting a fundraiser in April with 100% of the proceeds going to PWSAUSA. Would you consider joining Zahra and her family?

Join us at the inaugural Zahra’s Night of Light, held at the historic Bedford Hall in Bedford, NY. This family-friendly community gathering aims to unite us in support of families impacted by Prader-Willi Syndrome. Enjoy an evening of entertainment, delicious food and drinks, a silent auction.

27/02/2025

Posting on behalf or the PWS BIPOC Affinity Group:

Do you want your loved ones with PWS to have the best options for care?
Come Join Us! We want to hear from you!
The PWS BIPOC Affinity Group is hosting a series of Listening Sessions.

If you are a family who identifies as Black, Indigenous, or other People of Color, we want to
hear from you! The goal of these sessions is to learn about your challenges, successes, and needs to guide our efforts.
Please join us (virtually) at one or more of these times:

March 4 (Tues) at 12pm ET - focus on ages 0-12
March 13th (Thurs) 7pm ET - focus on ages 0-12
March 20th (Thurs) 12pm ET - focus on ages 13+
March 25th (Tues) 7pm ET- focus on ages 13+ Families of color, and those who parent people of color can email bipocpws@gmail.com

26/02/2025

The Prader-Willi Alliance of New York has been hard at work designing plans to better support those in NY through connection, advocacy, and education... and we hope to have you join us!

Save the Date: May 2-3, 2025, there will be a mini-conference at the Hyatt Place in Albany, NY. Friday evening will be a "Meet and Greet". Saturday morning will feature presentations, while families can meet up at Huck Finn's Playland in the afternoon. Mark your calendar and watch for details!

Updating Contact Info: Having up to date state-specific information regarding individuals with PWS and their families helps us to better advocate, communicate, and connect! Even if you are already a member, please take a moment to complete the form at https://prader-willi.org/register (or scan the pictured QR code). If you update your information before Saturday, March 15, you'll be entered into a raffle for a PWANY conference package (which includes conference registration and one night at the hotel). Winners will be notified by March 17!

10/08/2024

Board members of the Prader-Willi Alliance of New York will be meeting early next week to discuss vision and develop an advocacy plan for the coming year.

As we want to ensure that we are representing the diversity of needs across the state and life span, having insights from those impacted by PWS will be vital. If you live in NY, would you please take a moment to respond to a few questions on the attached form.

The form is designed to take less than five minutes. Thank you in advance for your feedback!

https://docs.google.com/forms/d/e/1FAIpQLSeO3CkMJs0Rd4TFFiqFTZYDLFfYeemQZrrlHwYM93rV8x-Tsw/viewform

Regards,
Amy McDougall
President, PWANY

Your insights will help the board of PWANY to target areas of need and concern. Please know that we may be asking for more targeted feedback in coming months as we strive to advocate for every individual with PWS here in NYS. Thank you in advance!