Mom Urges Parents to 'Build Our Village' By Joining the PWS Registry


I'm thrilled to announce the Global PWS Registry, launched in 2015, now has more than 1,100 participants enrolled! If you haven't enrolled, please visit the registry website today to get started. If you have enrolled, please update your information in the registryIt's very likely that over the past year, your management of PWS has changed — it's crucial to track these in the registry.

One PWS mom who has participated in the registry is Ali Shenk. I recently asked her to talk about her experiences joining the PWS registry and what she's gained from the experience — read below for her responses.

What were you hoping to gain from the PWS registry?

I/m so thankful for those who have dedicated themselves to researching PWS and caring for those with the syndrome. With that in mind, I want to make it as easy as possible for them to continue their work. The PWS Registry saves valuable (precious!) time by having the information already there for researchers and clinicians to access it instead of having to start completely from scratch each time. If even one step in the development of a clinical trial, for instance, is saved because of readily available information in the Registry, that's priceless! Raising our kids takes a village, and advancing research and care for those with PWS takes a village, too! Our job, as parents in the PWS community, is to provide the information necessary for our village to move forward.

How have you used your access to the registry's data?

I filled out the initial surveys and it was helpful to look at different areas (neurological, medications, etc.) and systematically think through how my son is affected by PWS. I recently updated the surveys that I originally I filled out in 2015, and as I progressed through it, I was pleasantly surprised that while some issues have worsened, most were the same or improved. The Registry is a great way for me to track my son's progress. 

Why should parents participate in the registry?

Our community, while well connected, is small. We cannot take for granted that researchers, clinicians, and other experts have the information they need from the PWS population. Sometimes the things that parents think are so obvious about our kids are not well known to clinicians – the registry will help make these trends apparent.

Are you already in the PWS registry? The registry is collecting data to show the course of PWS over time, so please update your information. Has your loved one with PWS developed scoliosis? Has your supplement or diet regimen changed? These are important pieces of information to track in the registry.

And if you haven't gotten started, please visit the PWS registry and enroll today. For more information regarding the registry, download the PWS registry brochure.

If you have any questions regarding the registry, please contact Jessica Bohonowych.

Global PWS Registry  |  Enroll or Update

Topics: News

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.