Minnesota Prader-Willi Syndrome Association

09/23/2026

What a great event this will be, featuring the creative spirit of our own community members!

09/21/2026

Tomorrow is the Minnesota Rare Disease Advisory Council's Policy Forum and Community Debrief! Our President, Jennifer Andrews, will attend in person, and YOU are also invited to register for the virtual or in-person option! If you plan on attending, please reply here so we know if more of us will be there! We'd love to see you! Come hear what the RDAC is prioritizing for legislation that affects rare diseases AND listen and participate in determining what else could be on their agenda!

08/28/2026

EVENT ALERT!

A great, informative event about state and federal policy that affects rare disease communities like ours!

08/20/2026

This is sure to be a special night!

Save the date! Join us for a free Diverse Voices Showcase Night on Thursday, Oct. 15 (early evening) at FilmNorth’s new Media Arts Center (2441 University Ave W, St. Paul).

Meet our amazing participants and facilitators, learn about our mission, and enjoy ~30 minutes of fantastic short films produced in our workshops!

It’s a free, ticketed event—we’d love to see you there! Keep an eye on our website - www.diversevoicesproject.org and Facebook channel for registration details. FilmNorth Minnesota Prader-Willi Syndrome Association Stepping Out Inc Prader-Willi Syndrome Association USA Springboard for the Arts Minnesota Department of Human Services Community Services

08/19/2026

Fall Fun Day is so much FUN! Hope to see you there!
RSVP at the link: https://docs.google.com/.../1FAIpQLSftMvlGqp.../viewform

08/08/2026

Fall Fun Day is right around the corner! Who's coming? Let us know at this link: https://docs.google.com/forms/d/e/1FAIpQLSftMvlGqp_vLCyDEj4zgS4UeUfz2XVkd2y8D0lf87bSWZJQMw/viewform

08/08/2026

Get ready for Back to School with a free webinar featuring Destiny Pacha, Ed.D of EmpowerED Solutions!

August 12th at 7pm EST

Empowered Education Solutions was founded to support families of children with varying exceptionalities and unique abilities nationwide. Through ongoing collaboration with the family and school, Dr. Pacha helps families understand the often-overwhelming special education process through personalized coaching and consultation services.

In this webinar, Dr. Pacha will discuss ways to best advocate for your child’s needs, how to prepare for your first IEP meeting of the school year, and set your student up for a successful school year.

This event is free! Registration required https://www.eventbrite.com/e/ready-set-advocate-back-to-school-strategies-for-ieps-504-plans-tickets-1996127834086

08/08/2026

✏️ Hello August…
and you know what that means —
Back to School season is officially here‼️

Across the country, students are getting ready to head back to the classroom. Some are already starting, while others still have a few weeks to enjoy summer. No matter where you live, now is the perfect time to start easing back into routines 📝

For families of children with Prader-Willi syndrome (PWS), autism, and other developmental disabilities, preparation can make all the difference. Review your child’s schedule, practice new routines, visit the school if possible, reconnect with service providers, and make sure supports are in place before the first day.

📓🧡 To help, we’ve created FREE digital social stories and back to school resources to make the transition a little smoother. 🔗 https://www.empoweredsolutions.org/resources

08/08/2026

Start the School Year Strong Webinar

When: Thursday, August 20, 2026
Time: 7:30-9pm EDT | 4:30-6pm PDT
Where: ZOOM
Soleno Therapeutics, a Neurocrine Biosciences Company, recently announced it will host a back-to-school webinar focused on preparing and supporting individuals with PWS and hyperphagia in the transition into the school year. As part of this webinar, a mother of a loved one with PWS will share her experience as a schoolteacher and their family's experience with VYKAT XR. In addition to inviting families, Soleno is also hoping to encourage school personnel (e.g., teachers, nurses, counselors) to attend and add the information shared to their toolbox for caring for students living with PWS and hyperphagia.

https://event.on24.com/wcc/r/5424990/01A0A60C4A795BE16167539D9068E9EB?bbeml=tp-qsi9xXB5y0KqhGk8MXKG2Q.jXXKh_qAsOUaDetVGrzFQhA.rw5rT5SkAYkKm0cBQEkLR-A.lT8FEvCWiOkWHIwl7x1WdbQ