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On an early Sunday morning in October, I will be joining a few thousand others who’ve decided running 26.2 miles sounds like a fun way to spend a fall morning. This will be my third entry into Milwaukee’s Lakefront Marathon and I’m quite proud to be representing and raising funds for the Special Friends Foundation (SFF) again this year.
When my daughter Addie, now nearly 6, was diagnosed with Rubinstein-Taybi Syndrome (RTS) nearly 4 years ago the first shoulder we leaned on was that of the SFF. RTS is a relatively uncommon genetic condition that impacts individuals like Addie 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 in 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.
Last year, thanks to the kindness of so many wonderful people we were thrilled to make a nearly $11,000 contribution to Special Friends. I don’t know that we could expect in our wildest dreams to match that again this year, but I do know that every cent we can provide will go a long way toward helping some wonderful people in need.
Our friends at the William Starck 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.
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
For more info on RTS, click here.
For more info on the Special Friends Foundation, click here.
For more info on our life with Addie, click here |
