Tennessee Prader-Willi Association, Inc.

11/15/2025

02/19/2025

We’ve made it easy to contact your representative about a very important issue affecting the PWS community, cuts to the NIH (National Institutes of Health). Follow the link to a pre-written letter to share with your representative. Simply type in your name, street address, zip code, phone, and email, and hit send.

Learn more about this issue and send your letter at https://www.pwsausa.org/call-to-action-save-our-clinical-trials/

To be taken directly to the letter, please visit https://p2a.co/IgTXkFp

We encourage those who are concerned to please contact their representatives and tell them:

"Please Protect Medical Research and take action to ensure that NIH funding remains intact and that medical research remains a national priority. I ask that you oppose any further cuts to NIH funding and restore recent reductions, support legislation that ensures stable and sufficient funding for rare disease research, and advocate for transparency and accountability in the decision-making processes affecting clinical trials."

02/18/2025

New research reveals key mechanisms in brain development and function linked to genes differentiating Type 1 and Type 2 deletions.

02/18/2025

By activating a master epigenetic switch using CRISPR, naturally suppressed genes can be turned on, offering hope for Prader-Willi syndrome.

02/10/2025

What is Rare Disease Day?

Rare Disease Day was first launched in 2008 by EURORDIS (the European Organisation for Rare Diseases) and 65+ national alliance patient organisation partners. The goal was to raise awareness about over 6000 rare diseases and the challenges faced by those affected.

The date chosen was 29th February, the rarest day of the year, to symbolize the uniqueness of rare diseases. When there isn’t a 29th in February, Rare Disease Day is marked on 28th February.

Since its inception, Rare Disease Day has grown into a global event, with participation from over 100 countries.

To find out more visit www.rarediseaseday.org/what-is-rare-disease-day/

Also don’t forget you can get your own Rare Disease frame by messaging us the photo you’d like to use and we’ll send it back in the frame. Alternatively you can email the photo to [email protected]

10/25/2024

People with PWS can avoid obesity. Our experts have worked together to publish a 1-page document on how families and carers can manage the risk of obesity for the people with PWS they support. Feel free to download and share.

https://ipwso.org/wp-content/uploads/2024/10/Avoid-obesity-leaflet.pdf

10/25/2024

https://www.facebook.com/share/p/V1kqxJtaTRbnFm5c/

PWS can come with many symptoms and affects many areas of the body, mind and development.

The symptoms of PWS are on what is known as a spectrum and vary from person to person regarding their severity.

One way to describe it as like a mixing deck at a recording studio with the slide controls. For some people the hunger slide may be up high but they may have lower levels of sleep disturbances or scoliosis. Whereas for someone else scoliosis could be high but their issues with food more manageable.

There can also be changes within a person over time and people with PWS can have increases or decreases in certain symptoms for a period of time.

PWS is a very unpredictable syndrome and not only varies from person to person but can also vary within a person over time.