Part of our PWSA | USA team, along with fellow PWS advocates, attended Rare Disease Week in Washington, DC, February 24-26. Our advocates attended group lectures and sessions alongside other rare disease advocates the first part of the week, then met with their elected officials on Wednesday. Our advocates say they had a successful experience on the hill, spreading awareness of PWS and the needs for the rare disease community, and garnered some support for their “Asks.” Below are some first-hand accounts from our advocates.
“What kind of impact do you feel you made / or / what do you think was the biggest thing you did to make an impact?
“I believe the best part and most significant experience was being there to share my story. Listening to others telling their stories. The most impactful and meaningful part was that even though I didn’t meet any of the members directly, each of the member of their staff we did meet with were very engaged in the conversations due to living with a Rare Disease themselves and getting to hear their stories in return.” – James Towle, 38, living with PWS, Massachusetts
“”I think our impact for rare disease week is strength in numbers. Our PWS community had a presence. We felt it, and so did those around us. They wondered who we were, and what our fight was. I’d say for the first time ever, 75% of the people I spoke to even heard of PWS and it’s mostly due to our past advocacy presence. But, I had a staffer know a person personally with PWS, and that was so helpful. We have to keep showing up. That 75% needs to be 100% and not just in advocacy events. The more people know, the harder they will fight for us.” – Sheri Mills, mom to Lyra (living with PWS), West Virginia
“I was fortunate enough to meet both of my Senators in person this year. They are both committed to working with the rare disease community and the PWS community. They are empathetic to our issues – things like cuts to Medicaid and threats to research funding. They asked for personal stories – stories they can use to fight against changes that may impact our loved ones. I was very encouraged.” – Elaine Towle, mom to James (38, living with PWS), PWSA | USA Advocacy Specialist, Massachusetts
“I found the majority of our elected officials, regardless of the side of the aisle they are on, were very supportive and do not want to see cuts in funding to research. Hearing real stories, putting faces to dollars was impactful.” – Stacy Ward, CEO of PWSA | USA, New York
“I feel like our collective voice was heard and well received. More and more people have heard of PWS and support rare disease legislation. The biggest thing I did was meet with my representatives who will not only work at my state level but on a national level as well. I feel like not only did I give my son a voice but everyone in the rare disease community.” – Lynn Garrick, mom to John (19, living with PWS), PWSA | USA’s Medical/Research Coordinator, Minnesota
“We had a fantastic experience connecting with our representatives, sharing our stories, and reinforcing our key asks. Through these meetings, we also built valuable new connections with representatives who were not fully informed about several of our advocacy priorities in Nebraska. One of our biggest achievements was establishing these connections and capturing meaningful moments through photos! Even more importantly, half of the representatives we met with are now taking action on our PRV “ask” and committing to join the Rare Disease Caucus. This is a significant step forward, and we are excited to continue building this momentum!” – Sarak Kasaby, mom to Khaled (5, living with PWS), PWSA | USA Information and Referral Specialist, Nebraska
“Walking the halls of Capitol Hill again with my 7-year-old son, Hunter, was more than just advocacy—it was history in the making for PWS. His voice, our story, and the power of the rare disease community came together to inspire real change. This week, we didn’t just share our journey—we took a stand for a better future.” – Dorothea Lantz, mom to Hunter (7, living with PWS), PWSA | USA Director of Community Engagement, Florida
“I think the best thing Samantha and I did to make an impact was to meet with the legislative assistant for our newly elected Congressman. We were able to educate him on PWS and how it impacts our family. We shared the barriers we have and how he can help both the PWS community and the rare disease community overall by supporting key legislation. Plus we encouraged him to sign on to the rare disease caucus. My impression is that this was not on his radar yet prior to our meeting, but he was very open to hearing our story.” – Michelle Cox, mom to Samantha (6, living with PWS), California
“One of the most impactful moments in DC was to share our PWS story with elected officials. By putting a face to this rare disease, I was able to raise awareness not just for PWS but for all rare diseases, helping policymakers understand the challenges our community faces. Advocacy is about making connections, and I truly believe that personal stories have the power to drive change.” – Kristi Rickenbach, mom to Justice (21, living with PWS), PWSA | USA Family Support Coordinator, Minnesota
“The PWS community may be small, but we are mighty. As rare disease advocates, we are indeed, as Everylife says: stronger together. Our conversations with republicans and democrats really showed me that rare disease IS a bipartisan issue. Sharing our stories, our needs, and how Washington’s decisions affect our families is absolutely crucial.” – Jennifer Andrews, mom to Josephine (7, living with PWS), Minnesota
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.