February 29th, Rare Disease Day, is just around the corner! PWSA | USA and PWS advocates will be meeting in Washington, D.C. to make their voices heard at Rare Disease Week. To date, there are over 10,000 rare diseases, 95% of which are without FDA approved treatments. 70% of genetic rare diseases start in childhood and the average time it takes to get an accurate rare diagnosis is 6-8 years! Overall, there are 400 million people worldwide affected by a rare disease.
These numbers are staggering! Rare Disease Week is an incredible opportunity for the rare disease community to come together and advocate for our loved ones. PWSA | USA is excited and grateful to participate in this event. The PWS community will be well represented!
Contributed by Dorothea Lantz, Director of Family Engagement for PWSA | USA:
“On Sunday, February 25th, PWS advocates from across the country will descend on our nation’s capital to celebrate Rare Disease Week. Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. This event will provide an opportunity for our PWS participants to be educated on policy proposals impacting the rare disease community, including PWS, and will provide them with an opportunity to advocate for policy changes directly to their Members of Congress. In addition to having their voices heard, our advocates will use this event to help to set the stage for our PWSA | USA D.C. Fly-In this May. Thank you to all our hard-working advocates for taking this opportunity to share your voices; your relentless persistence to change the face of PWS and all rare disease is inspirational, and we are grateful for all you do.”
Contributed by Stacy Ward, CEO of PWSA | USA:
“We look forward to taking our PWS Advocacy efforts to Washington, D.C. for Everylife Foundation’s Rare Disease Week. As we unite with fellow advocates and leaders across diverse rare diseases, we recognize the importance of amplifying our collective voice. With Prader-Willi syndrome (PWS) being one of 10,000 total known rare diseases, it’s imperative we ensure our presence on Capitol Hill. Each voice, each story, contributes to raising awareness and helping others, especially our elected officials, understand the PWS community’s unmet needs. On behalf of all of us at PWSA | USA, we want to extend our deepest appreciation to every PWS advocate joining Rare Disease Week and to those championing our cause nationwide.”
Participate From Home
Can’t make the trip to D.C.? You can participate in Rare Disease Week from home and still support our PWS community.
- Click here to create a Walk a Mile in their Genes advocacy campaign page and help raise money and awareness for PWSA | USA’s 2024 Advocacy initiatives and programs. You can also donate to existing Walk a Mile in their Genes participant fundraisers.
- Wear zebra stripes to show your support. Talk to your child’s class or invite friends to ask questions about PWS and your loved one.
- Share your rare story on social media to help spread awareness of rare diseases like PWS, the need for research funding and policy changes, and the immense challenges the rare disease community faces every day.
- Participate in Global Genes “Zebra Tales” initiative. Click here to learn more!
- Express your gratitude to the advocates on the front lines of the fight for recognition, research, policy change, and treatment options.
- Let your community know that you are a part of the rare disease community and invite them to share their support.
It takes a village, and the rare disease community is gathering!
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.
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.
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.
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.
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.