Michael Ellis's Fundraising Page
This October when I join 2500 other folks at the starting line for Milwaukee’s Lakefront Marathon, I will be honored to once again be representing the Special Friends Foundation. When my daughter Addie was first diagnosed with Rubinstein-Taybi Syndrome five years ago, the first shoulder we leaned on was that of Special Friends and they continue to offer support and direction to families touched by RTS.
RTS is a relatively uncommon genetic condition that impacts individuals physically, medically and cognitively to varying degrees. Because it is rare, difficult to diagnose and the community relatively small, access to information about RTS can be challenging to come by. Special Friends was critical in helping us gather information, resources and connections with families touched by RTS from across the globe.
The SFF offers families financial assistance for medical and therapeutic needs incurred because of RTS that may not be covered by other insurance or medical assistance programs. They also help underwrite RTS family reunions that happen in varied hubs across the US. It’s at these reunions that families affected by RTS gather to laugh, cry, and share the experiences that help each other on the journey and offer each other the tools they need to provide an enriching and loving environment for their children. Terri, Cate, Addie and I are attending the RTS Family Conference – the first since 2003 – and Special Friends will partially fund accommodations for many families at this globally attended gathering of those touched professionally and personally by RTS.
I’m excited to share that our friends at the William Stark Jones Foundation have graciously offered to match the first $2000 raised and we look forward to hopefully taking full advantage of their generosity again this year. Special thanks to Tom Landers and everyone at the Foundation for thinking of us and for encouraging me to keep this going.
Thank you for taking the time to visit the site and for considering helping out the Special Friends Foundation. Please feel free to pass the information along to anyone you feel might be interested.
To learn more about RTS, click here.
For more info on the Special Friends Foundation, click here.
For a peek into our day-to-day life with Addie, click here