As we close out the month of May, I want to take a moment to acknowledge the parents, siblings, family members, professionals, providers, advocates and staff who work diligently to make the world a safer and more accessible place for people with PWS. In the last few decades, so much has changed for a person with this syndrome. While significant challenges remain, outcomes have changed for the newly or more recently diagnosed. Our senior statesmen and women with PWS would not be here today without the help and support of their community and the advocacy of their families for much needed services. It is certainly not a “done deal” yet. Clearly more needs to be done on many fronts. More research? Yes! More PWS specific residences? Yes! More vocational and educational options? Yes! Fewer food focused celebrations? Yes! Whatever you are passionate about, find your voice and join in. Visit those PWS chapters, organizations, foundations, social media groups, etc. that you feel welcomed and supported by. Join one, join many. Wrap your arms around families new and experienced living with this syndrome and know you are not alone.
"Success will never be a big step in the future,
success is a small step taken just now. "
Learn about Prader-Willi syndrome
The Value of Specialized PWS Placement
Amy Carroll Shares Her Story