April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon and decided to host a fundraiser in honor of his brother, Gavin, 16, who is living with PWS, and on behalf of PWSA | USA. We asked Joe a few questions about being a sibling to an individual living with PWS and here's what he had to say:
What is your connection to Prader-Willi syndrome?
I’m connected through my younger brother Gavin who was diagnosed with PWS back in 2005 shortly after birth.
What is the most important thing you’ve learned being a sibling to an individual living with PWS?
I’d say it’s truly the small things in life that matter and to prioritize those. Everyday, Gavin is able to find joy in the smallest things and it’s often time the smallest acts that make his day. It’s something that I think we lose touch with as we get older and get caught up in the little complexities of our busy lives. But, if you spend an afternoon with Gavin, you’ll forget all about that ”big stress” in life and be amazed by just how much fun you have doing simple activities.
Is there anything you can recommend to other siblings in our PWS community?
The two most important pieces of advice I’d recommend to other siblings of PWS is first, to try to spread as much awareness as possible, and second, find what your sibling is really excited about and try to learn more about it. As of now, PWS is still not well known and that needs to change if we want to make a bigger impact. So, that starts with us spreading the word about what PWS is! I also recommend learning more about what they’re interested in because it means the world to them to share their interests and it’s a great way to bond with them!
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Joe is close to raising his goal of $32,000, which will help fund PWSA | USA research initiatives. You can show your support for Joe by clicking the button below.
About Gavin's Sweet 16 Run Against PWS
When I began this special project to honor my brother Gavin just a few short months ago, it was my greatest hope to raise at least $16,000 in honor of his 16th birthday. I can’t begin to thank everyone who helped us to get there AND blew our whole family away by helping us to reach our second goal ($26,200) to reflect the 26.2 miles that make up the Boston Marathon’s length. I am so inspired by the support and so grateful for the donations, the encouragement, and the momentum of this effort. With the marathon less than one month away, I am increasing my goal to $32,000 - double my original goal. If you have already donated…. THANK YOU! If you have not, join me in raising awareness and much-needed funds in my “Race Against PWS”!
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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.