Photo of ripples in water and a mother and daughter with Prader-Willi Syndrome

Ripple Effect: Advocacy in the PWS Community

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
The Lorax, Dr. Seuss 

Contributed by Jennifer Andrews, Advocate and Mom to Josephine

A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw a stone in a pool, yet the ripples continue to grow and grow. In much the same way, I didn’t come in to this fight with a big splash, but my confidence and involvement as an advocate continue to grow. 

I came to know pretty quickly after Josephine was born that I wanted to be a part of serving the larger PWS community. The more I listened to families ahead of ours on this journey, as well as those just starting out, the more I developed the conviction that we all deserve better. And that because our children, whether adults, juveniles or babies, are unique, the notion of a one-size-fits-all medicine, treatment, or any kind of support will not suffice to meet the varied and unique needs of our children. “If you’ve met one child with PWS, you’ve met…ONE child with PWS.”

How I Began

In 2019, I reached out to PWSA in hopes of lending my time and skills to the Family Support group, but I was encouraged to join the Advocacy group instead. At the start, I did more listening than speaking because it was all so new to me, and I didn’t understand how I fit in. As leadership changed and developed, so did the Advocacy group. As it became more active, ambitious, and focused, so did I. I became more and more involved and vocal. I wrote and then began calling my legislators. 

The first time I picked up the phone to call a senator’s office, I was nervous. I didn’t realize that they don’t expect a policy expert on the other end of their line. They expect you, their constituent, to have a problem to solve. They listen. In 2022, I met with legislators’ offices in Washington, DC, at PWSA USA’s first ever Fly-In as part of our 50-person team. Again, I was very nervous. But again, it turned out that the expectation was simply that I was a constituent who was bringing them a problem to solve, along with a solution: support for specific legislation. With every step I’ve taken on this journey, I’ve had nerves and doubts: was I doing this right? Who would listen to little ol’ me? What I finally realized is that I am there to be who I really am: a parent and caregiver who is doing everything she can to help her child be their best self, and who now needs their help to keep pursuing that goal.

The Asks

I want to ensure that the support, services, and treatments for individuals with this syndrome are robust offerings. I want to support all pharmaceutical companies and all medical research that enters the rather inhospitable environment of rare disease treatments and cures, especially, of course, the ones targeting PWS. I want to ensure that home and school environments, whether ours or someone else’s, are safe for our children. The list of to-do items to make a good, safe life for people with PWS is long. 

Voices of Advocacy

But there is something deeply satisfying about working on that list. This sentiment is shared by everyone who is doing this work. Here are a few more voices of those who have joined in advocacy:
My name is Sue, mom to Shealynn an amazing 4-year-old little girl living with PWS. After Shealynn’s diagnosis at birth, I was filled with grief, sadness, and anger. Time quickly passed and I watched Shealynn struggling every day to do things like rolling over, eating, and sitting. It was then when I understood how complex PWS is, and I knew something had to be done. At that moment my journey to advocacy began and what a journey it has been. Being an advocate for PWSA USA has been an empowering experience. It has given me the opportunity to be Shealynn’s voice and the voice for many others living with PWS. Advocating has changed my entire perspective.  The feeling of grief has been replaced by the feeling of fight, and hope. I believe changes are coming. Our voices are being heard. There is power in numbers and advocating creates an opportunity for our loved ones to have a voice. It’s very rewarding to see all the positive things coming due to the persistence and dedication of advocates. Advocates united in passion and the belief that our loved ones can and will live a better quality of life. Her fight is my fight, forever and always! -Sue Colon
I am Mom to Logan, age 31 with PWS.  I got involved in advocacy because having walked this path for 31 years I have experienced the very best and the very worst of PWS.  I want this to benefit others. I have developed a strong voice and want to use it to seek untapped opportunities, better outcomes and ultimately positive quality of life our individuals and families. This syndrome affects not only the person with PWS but every aspect of the family and community dynamic. There is a lot of positive potential to be made! – Jamie Prentice

Having been a father for the last 4 years of Angelica, I have seen and heard of the shortfalls our love ones encounter while living with Prader-Willi Syndrome (PWS). Furthermore, I did not encounter anyone of my ethnicity for three years, my career or gender within the PWSA|USA Advocacy Team.  Therefore, I felt it was my spiritual duty to get involved in advocacy to be a VOICE for my daughter and others affected by PWS especially those of black and brown dissent. My desire is to use my voice to 1. Seek treatments or legislation to address the issues associated with PWS. 2. Ensure diversity and inclusion is considered in all aspect of PWS drug/treatment development (clinical trials) 3. Show the importance of the involvement of person of black and brown dissent, military service and male and also as a way to say it is OK to not be OK, but we have to get involved to secure the Hope our loved ones desire and deserve. -Charles Conway

I got involved with PWSA and advocacy because I saw a need in my state of West Virginia. Someone with Prader-Willi, like my daughter, is not being supported like she/they should be. Even at five years old, she is not able to qualify for services that would help her and our family tremendously. I believe part of it is that elected officials do not know what PWS is, and that we need support. I have a voice to make change. Advocacy means getting programs and assistance that is needed and explaining to elected officials why it’s needed. As she gets older, the need is not just on a family level, but an individual level. How are we setting her future up for success? As a family, we are encountering new challenges like behavior and food-seeking. Things we didn’t face when she was younger. We need medication and policies for medication approved or changed. We are a united front, and the more that advocate, the stronger we are. Strength in numbers make change. -Sheri Mills

I became an advocate to be a voice for those who are not able to. I want to make a difference for everyone living with a rare disease. -Justice Rickenbach

I got involved with our Advocacy to do everything I could do to make my son’s life better. Having been to DC twice, it’s astonishing the connections we have made. The Senate and House offices we have met are extremely helpful and supportive. Teaching others about our stories and fight has allowed me to grow in resistance and strength. Can’t wait to go back and reconnect with all of them. -Andrew Gilly

DC Fly-In

The few days that I have spent in our capital on behalf of the PWS community, have been a whirlwind and an honor. I feel fortunate and excited to be participating in PWSA’s second DC Fly-In in May along with 150 other members of the PWS community. I know that we will work together and use all our resources to make as much of an impact in those days as possible.
But here’s the thing: there’s so much you can do from home, and at home. 

Where to Begin 

I encourage you to explore the PWSA USA Advocacy site. On it, you will find upcoming events, an easy way to locate your representatives, and current legislation that you can support from home. This site is full of resources that will support you through whatever level of advocacy you decide is right for you, whether you are joining a Facebook group, writing a senator or joining a fly-in. 
Social Media: 
  • Educate and build awareness through social media.
  • February 29 (the rarest day on the calendar), is Rare Disease Day, use this day to talk about PWS and what having someone with a rare disease in your family means for you. Learn about the Promising Pathways Act and talk about why it matters to you!
  • May is PWS Awareness Month and, thanks to PWSA USA’s legislative advocacy efforts in DC, May 15 is now National PWS Awareness Day!  Use this special month and day to celebrate your child and family, what PWS is, and how people can help with fundraising and advocacy.
Get Involved in Legislative Advocacy: 
  • Look toward the bottom of the PWSA USA Advocacy page for a link to automatically send emails to your legislators. It’s that easy. 

  • Find out who represents you and what they’re up to through PWSA USA’s Advocacy Website
  • Call or write your representatives to share your experience with PWS, and what they can do to help. If you need help with this, PWSA USA will help you. We have experienced advocates who are willing to join you on calls and zoom meetings to support you in effectively sharing your story. Contact for more information.
  • Get involved in the PWS State Qualifier Campaign. More than half of our great states have yet to recognize PWS as a qualifying condition for developmental disabilities categorization, which gatekeeps access to a number of state-funded supports and services.
  • Join the advocacy work group! Contact

  • Please don’t miss the wonderful Advocacy Toolkit developed with Patients Rising. We are so lucky to be collaborating with and working alongside other rare disease organizations. Much of the legislation we support benefits all rare disease drug development in hopes for a better future, not just for the PWS community, but an estimated 25 to 30 million Americans affected by rare diseases. We are not alone in this fight for hope. I hope you join us. 
  • Join the Walk A Mile in Their Genes fundraiser by donating or creating your own fundraising page! A great way to support PWSA USA’s advocacy efforts and their ability to sponsor participants is to join the current Walk A Mile in Their Genes fundraising campaign, going until March 18. The website to register is here and the social media toolkit is linked in the top menu or here.  

Let’s not just make ripples, let’s make waves and create a meaningful, lasting mark on PWS. Let’s ensure that our members of Congress never forget that we are also their constituents. Let’s make a better future for all of us. Let’s do it together. 

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