Thank you for visiting my fundraising page for SPECIAL FRIENDS FOUNDATION INC!
TCS NYC Marathon :: November 2, 2014
Support me. I’m running for RTS and for SFF. #runforteddy
I’m training for the NYC Marathon and could use your help. The marathon is only weeks away.
When I was selected as one of the thousands of entrants through the lottery earlier this year – I was thrilled. Then reality set in pretty fast. Finding the time to train and log in the necessary mileage was a huge struggle for me.
After this recent last long training run – I realized that I needed to make my running and my training more meaningful. I decided to run for a charity that has special meaning to me. I am running for the Special Friends Foundation.
Two years ago, my youngest son, Theodore, was diagnosed with Rubinstein Taybi Syndrome. RTS is a very rare genetic chromosomal disorder. Hearing such a diagnosis was devastating. There is no cure for RTS and because it is so rare, very little is known about RTS. Typical those affected with RTS face daunting physical and developmental delays. After a period of coming to grips with this diagnosis, we immediately went into action and started looking into what can we do as parents and as a family to help Theodore get the most out of life. To be the best that he can be. What did RTS mean for him, for our family? We don’t know. We can’t predict the future. We can only live today and celebrate what he has accomplished.
Early on, we are very thankful to have been put in touch with The Special Friends Foundation and the RTS Listserv. There we found a small global community of families who are going through what we were going through, who celebrated with us, cried with us and shared their experiences with us.
Special Friends Foundations organizes reunions across the US for RTS families. SFF also provides RTS families with financial assistance for medical and therapeutic needs incurred that may not be covered by insurance or medical assistance programs. SFF helps families with communication devices, sign language education and many other things that are essential for our special kids to fully participate in life and all that life has to offer.
Won’t you help me in supporting such a wonderful foundation that gives so much back to our RTS families?
Thank you for taking the time to visit this page. For your support of the Special Friends Foundation. For your encouragement.
To learn more about RTS, http://rubinstein-taybi.com/ .
For more info on the Special Friends Foundation, http://specialfriends.org/ .
Amanda (Chin) Li (Theodore Li - RTS age 2)