Prader-Willi Association of MI

05/10/2023

Scholarship Applications for the 2023
PWSA-USA
Convention are due tomorrow! (May10)

05/04/2023

Scholarship applications are available to assist Michigan families to attend the 2023 PWSA National Convention!
Deadline is Wed., May 10!

04/25/2023

SCHOLARSHIPS NOW AVAILABLE to Michigan families to attend the 2023 National Convention!
Deadline to submit your scholarship is Wednesday, May 10.

Send a DM and we will send you an application.

It pays to plan ahead! Early bird pricing for Convention registration is available through May 31, 2023 at https://pwsausaevents.cventevents.com/37thPraderWilliConvention. You won't want to miss this opportunity to gather together in-person to connect (and re-connect) with other PWS parents and families, health professionals, and our loved ones living with PWS. We hope to see you June 21st - 24th at the Hilton Orlando Buena Vista Palace in sunny Orlando, FL!

01/25/2023

Have you registered yet? Who is going this year? I know I am excited to go this year!

It pays to plan ahead! Early bird pricing for Convention registration is available through May 31, 2023 at https://pwsausaevents.cventevents.com/37thPraderWilliConvention. You won't want to miss this opportunity to gather together in-person to connect (and re-connect) with other PWS parents and families, health professionals, and our loved ones living with PWS. We hope to see you June 21st - 24th at the Hilton Orlando Buena Vista Palace in sunny Orlando, FL!

04/20/2022

There are lots of different items in the catalog here. Great resource for anyone who needs it!

Did you know that MDRC’s Assistive Technology Program has robotic cats and dogs for disabled people of all ages to try or borrow on an open ended loan? These electronic companion animals can help with loneliness or anxiety for children or adults. They respond to voice and touch.

If you would like to try one, call or email the assistive technology team:

https://mymdrc.org/assistive-tech

Image description:
A young girl sits on a bench in front of her window next to a robotic golden retriever. The girl has purple horse pajamas on and has rainbow socks on her hands. The dog has a pink tshirt on and colorful socks on its paws. The girl is holding more colorful socks. The girl and dog are surrounded by other toys.

02/24/2022

IDEA says if a student is going to be removed from their placement for 10+ days, then the district needs to determine if the behavior is disability related or if the behavior is the result of the IEP not being followed. This is called Manifestation Determination Review.

These two upcoming webinars can help you better understand counting disciplinary removals and how to navigate the MDR process.

Tuesday, March 1 for Counting the Days https://tinyurl.com/mre7fnwk
and/or
Tuesday, March 8 at 12pm. https://tinyurl.com/yanb27xp

And visit our website to see our full calendar: www.michiganallianceforfamilies.org/upcoming-events/

02/15/2022

New items in the PWSA USA store!!!

Show your PWS pride and Wear Your Rare ALL YEAR ROUND with our newly designed PWSA | USA Merchandise! Shop Wear Your Rare shirts, sweatshirts, onesies, mugs, water bottles, bags, and MORE when you visit https://www.bonfire.com/store/pwsausa/.

02/07/2022

Please consider helping this wonderful family out!

https://gofund.me/815d0e5a

On April 7, 1995, Sara Sutphin was born with two debilitating diseases - Mitocondr… Holly Lynne Davis needs your support for Help Sara get an accessible van

09/21/2021

IDEA states that a child should attend his or her Individualized Education Program (IEP) conference, if appropriate. Each family decides what makes sense for when their child starts to participate, based on individual circumstances.

This IEP Owner's Manual is a useful resource from PACER Center. Youth learn about the different parts of their IEP and share their plans for life after high school.

https://www.pacer.org/parent/php/PHP-a55.pdf

More self-advocacy tools on our website at https://www.michiganallianceforfamilies.org/self-advocacy/

04/19/2021

Michigan’s own Carolyn Loker is spotlighted in the PWSA | USA Pioneers in PWS Series.
Thank you Jim & Carolyn for all you do for those whose lives are affected by PWS.

Check out the newest article from our Pioneers in PWS Series focusing in on our Parent Mentor Program! (Pictured are Carolyn and Jim Loker. Carolyn developed the "Packet of Hope" sent to newly diagnosed families and helped to create our early Parent Mentor program over 20 years ago.) To read the full article, click here! https://bit.ly/3wVYYtL

04/17/2021

If you missed the town hall about the DCCR drug trial and you would like to watch here is a link to the replay in its entirety. ❤

Town hall meeting with PWS families sharing their testimony about DCCR

04/10/2021

The PWS Community will be hosting a Town Hall on Wednesday, April 14th at 4:30est. Join us and learn more about DCCR, the impact it has had on patients and their families, and what DCCR means to the PWS community.

It will be moderated by Rare Disease Advocate, Jenn McNary and joined by Jennifer Miller, MD, Anish Bhatnagar, MD, CEO of Soleno, and other PWS leaders.

The goal of this town hall is to give the PWS community a platform to share their experiences with DCCR. We look forward to hearing from families who have direct experiences with DCCR, as well as all who have been impacted, whether it be the hope you've lost for the future or your chance for a treatment now! If you are interested in speaking during our town hall meeting, please visit tinyurl.com/PWSSPEAKER.

The link to join our town hall is tinyurl.com/PWSTownHall

If you have any questions, please reach out to us at [email protected]

04/03/2021

03/18/2021

The numbers are in! Look at how many people filled out the survey for the DCCR trial. This is amazing!