November 16, 2012
My son was diagnosed with Williams syndrome 20 years ago...never even heard of Williams Syndrome.....my son was in the hospital for failure to thrive...he had not been diagnosed at this point....another mother in the hospital who son had Williams Syndrome recommended that I contact a genetics doctor in Boston ( the mother thought my son had Williams Syndrome). I immediately contacted the doctor and days later my son was diagnosed with Williams Syndrome. 20 years ago there was not a blood test to determine Williams Syndrome...Diagnosis was made through various characteristics of the person. I remember asking the doctor now what, she handed me some papers and a card and said contact the WSA, they can help you with a lot of information and answer your questions. I contacted them and they provided a wealth of information. Additionally they connected me to other families in my area. So 20 years later we are still members of the WSA. Because of the WSA and their dedication to Individuals with Williams Syndrome and their families so many things have changed in the WS community.. There is now a blood test (Fish) to diagnose WS. The WSA works with the top researchers and doctors to help gain knowledge and awareness about Williams Syndrome. The conventions brings doctors who are familiar with WS and provide current information. What I love most about the WSA is they get it....they don't provide weighted blankets or leap pads to select individuals, they don't flood my email with invites to tupperware, avon or scentsy parties, what they provide is knowledge, awareness, path to doctors, WS clinics, networking, social events, conventions, research studies, scholarships, all the ways to help enhance the lives of the greater Williams Syndrome Community. One of the best feelings and sure to bring a smile to your face is to see all of the wonderful friendships that our children have made from attending conventions and social events...what a great group of people.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
MY ROLE:Client Served