9 years ago my family was blessed with the addition of a little ball of fire we named Addison. From day one is was clear that life with Addie would be a roller coaster ride and that we’d be introduced to many new experiences along the way. One of those was Rubinstein-Taybi Syndrome which she was diagnosed with at about 2 ½ years old.
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. Very shortly after receiving Addie’s diagnosis, we were introduced to the Special Friends Foundation which was critical in helping us gather information, resources and more importantly connecting us with others who were already travelling the path we were embarking on to get some ideas about what may lay ahead.
SFF helps 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. They also offer families financial assistance for medical and therapeutic needs incurred because of RTS that may not be covered by other insurance or medical assistance programs, such as communication devices and other assistive technology, adaptive bikes, sign language education, and other things that enable kids and their families to participate fully in the opportunities life has to offer.
After taking a hiatus last year I’m taking on the challenge of running Milwaukee’s Lakefront Marathon again this fall. For added incentive and to keep me true to my training regimen I’m extremely proud to represent SFF again this year in the Marathon and do my little part to give back to an organization that has given RTS families so very much.
Once again, the William S. Jones Foundation has 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 your continued support of the SFF.
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 via Terri’s blog, click here