My son Tim turned 28 this year and this journey all began when he was diagnosed on November 4, 1993 with FXS. I called the NFXF right away to find out where to find other parents in LA. The only parent listed was Sali Farber in Orange County!
The internet was just beginning and the information it held was all very dismal. With the help of Dr. Barbara Wheeler and Deborah Langenbacher at Children’s Hospital University Affiliated Program Sali and I were able to find other families. Our first meeting was held with seven families in my living room in August 1994, 25 years ago! In 1996 we held our first educational conference at Children’s Hospital. In 1997 we became an official non-profit 501 c 3.
Our group has always been led and supported by volunteer family members. Many thanks to our past and current Presidents:
Mary Seward, Sali Farber, Deborah LeCover, Neal Robb, Naomi Star, Janet Rivera, Paula Paez and currently Jennifer Newsome. They have each brought their own talents and enthusiasm to lead our group through the years. We have hosted the 7th and 14th International Fragile X Conference in 2000 and 2014. We’ve had many family fun days, local educational conferences, fundraisers and A Mission to Lars! We are proud to have been the impetus to start the Fragile X Clinic at the Stramski Center at Miller’s Children’s Hospital under the leadership of Dr. Gary Feldman. Our 5k walk/run awareness event is now in its 7th year and we look forward to many more.
Thank you to all the families who have attended our events and supported our fundraising efforts over the years. We know the path is not an easy one but having the company of others along the way makes it easier!
Check out some of our articles at that time…