Dystonia
Support Group - Alabama 
News Articles and Publications
Dystonia Support Group - Alabama
Check our Upcoming Events page for information about future meetings!
Hello. My name is Linda Cannon-Mott, and I am the founder of the Dystonia Support Group of Birmingham, Alabama. I am a nurse, but I had never heard the word dystonia prior to my diagnosis. I developed Spasmodic Dysphonia in 1973 and Cervical Dystonia in 1989. Thirty years and eight doctors later I was diagnosed correctly. My immediate feeling was relief, at last I knew what was wrong with me and I wasn't crazy. I had felt alone for many years and was misdiagnosed with benign essential tremor. I was prescribed 10 to 12 medications that caused uncomfortable side effects with no improvement of my condition. Unfortunately people continue to be misdiagnosed today but not as often because of the dedication of many people to raise dystonia awareness.
I educated myself with the help of my physician and the wonderful information provided by NSDA, NSTA and DMRF. I needed support because I had never met one person that sounded or looked like me, the only person I could relate to was Katherine Hepburn. I sounded like her and my head shook like hers. I searched for support but there was none in our area. After much prayer on my part, and encouragement from NSDA and DMRF, I decided to start a support group. That was in March of 2005 with only six people present, the meeting being held in the food court of a local mall. We now have over 50 members representing twelve counties in Alabama and the states of Mississippi, Georgia and Texas. The six forms of dystonia are represented in our group and our ages range from eight to eighty.
I encourage you to browse our web site, see our growth, goals, accomplishments and hope for the future. As anyone living with dystonia knows, it is a roller coaster ride and a daily challenge, but together we can make a difference.
Sincerely,
Linda Cannon-Mott
Leader and Director of Support - Pat Wyatt
e-mail: PCAngel1102@aol.com
Vincent, AL
Fundraising/Business Director - Ken L. Williams
email: Klwmgw@aol.com
Birmingham, AL
Awareness Director
-
email:
Webmaster
- Trisha Crain
email: TrsCrain@aol.com
Hoover, AL
(L to R: Pat, Ken, Linda, Trish)
Membership is open to all dystonia-affected persons and their families. We may have sub-groups and special sessions for specific forms of dystonia...Cervical or spasmodic torticollis, spasmodic dysphnia blehparospasm, generalized dystonia, or writer's cramp. Otherwise we are all-inclusive, non-discriminatory to every dystonia patient, their caregivers, and families.
DSG has adopted four specific areas of service:
(1) Support - Support one another, offer companionship and guidance in learning how to cope with lost health and independence, changes in self-image and self-esteem, and help one another with all issues associated with these chronic movement disorders for which there's no cure.
(2) Awareness and Outreach - Increases awareness about all forms of dystonia among the medical and lay communities. Be a source of information about medical resources for various movement disorders and the various forms of treatments and therapies to give patients a choice.
Be pro-active in outreach activities such as speaking to Civic Clubs, Church organizations or wherever the opportunity arises to "tell the dystonia story". Court the press, television reporters and other media to enhance AWARENESS among medical and lay persons.
(3) Advocacy - Dystonia is an "orphan disease", meaning it does not receive a fair share of government health initiative funding, particularly to National Institute of Health (NIH). Funding for research and medical treatments is a political issue that must be dealt with. DMRF provides millions of dollars in research grants annually, as do other private organizations, but the necessary medical research funds can only come with government support.
(4) Business and Fundraising - DSG has daily expenses that require funding. Salaries are not paid to anyone. Professional services are pro bono. Funding for Medical Research is a priority. There isn't a cure for any form of dystonia. The cause of the movement disorders are as yet unknown. Research is needed now.
Dues are collected from members. $35 per member annually plus $10 to help offset postage costs.
Donations are accepted. Click to read "How Far Will $500 in Donations Go?", written by our Treasurer, Ken L. Williams. Ken will send you envelopes if you choose to write to friends and relatives asking for their support.
ONLINE SUPPORT GROUPS and BLOGS
Care4Dystonia maintains an excellent list of online Support Groups. These give patients an opportunity to interact with others with Dystonia across the globe!
Dystonia Support Group-Alabama (DSG) is authorized under the legal, non-profit status umbrella of the Dystonia Medical Research Foundation (DMRF). We are a Chapter 501(c)3 organization with tax-exempt status.