About Us Testimonials

The single most helpful experience for me has been attending last year's symposium in Seattle. What a fantastic way to meet great people and to learn more about ST/Dystonia and to learn that there is HOPE and LIFE after diagnosis.

Judy Meagher

Two years ago my life was unbearable because of the pain and crippling disease that I knew as Spasmodic Torticollis. I had no will to keep on going. Thanks to a member of the association my life has changed. She introduced me to ST/Dystonia and from the help and support from meetings, newsmagazines and symposiums I have also found the right doctor and have had an 80% improvement in my quality of life. With the association's friendship and help I now tell myself daily - I KNOW I CAN.

JULIE A., Wisconsin

When I learned we were going to the ST/Dystonia Symposium I really wasn't sure what to expect. Charlene told me she had ST and I could see that it was bothering her but I really didn't get it. Her neck would "twitch" and I thought she was stretching her neck in an attempt to get comfortable. Now I realize she wasn't twitching her neck, her neck was twitching her. My new understanding was helped immensely by attending the ST/Dystonia Symposium. I saw other ST'rs and realized, "oh, she's not alone." There was such compassion in the room. There is hope. You can live with ST and be happy.

LANCE C. AND CHARLENE R., Washington (written by Lance)

ST Dystonia has always accepted me the way I am without judgment and held me up when I've been down. To a disorder that is odd and strange in many people's eyes, ST Dystonia continues to provide answers and understanding for me and my family.

MONICA A., Michigan

ST/Dystonia has been there for me and my wife, Robyn, for so long they seem like part of the family. They actually knew of a doctor that could help my future wife who was living in Wollongong, Australia at the time. At different symposiums I have met various doctors and learned new techniques that have helped me. I love getting the newsletter; keeping up with old friends as well as seeing what is new in the medical field and how it is helping people. From the numerous Symposiums and 2 golf tournaments I have attended I have gained many, many new friends and met some of the most amazing people on the face of the earth!

BRIAN S., Michigan

This is a lonely, isolating disorder and I didn't realize just how much support there was until I joined this association. It's totally changed my life.

NANCY H., Texas

Becoming a member was like changing my life forever. Having the chance to share my story at the Symposium in Florida was my greatest achievement and it was the beginning of good friends, support and a chance to make a positive impact to those around me, and ultimately to the children I teach one day. Inspiration is what the organization has given me, and I take that with me everywhere, hoping to inspire others.

JAYDE M., Australia

ST/Dystonia, Inc., - saved my life - dramatic you say! It's true! I spent a year homebound and bed bound in horrific pain that made me contemplate suicide. The association helped support me with information and led me to my current doctor causing me to lead a productive life as best as can be with this disorder.

SUSAN D., Florida