National Spasmodic Dysphonia Association

From humble beginnings, the perseverance, patience and can-do attitude of this small group of volunteers has grown into a strong organization that provides a voice for those living with spasmodic dysphonia. Let's continue those efforts to ensure that the next 25 years will bring much greater understanding of spasmodic dysphonia through expanded research with improved and more effective treatment options. Working together with one, loud and clear voice, we can achieve our Vision for the NSDA - "Ensure the ongoing viability of the organization that will continue to lead the effort to eradicate Spasmodic Dysphonia" can and will become a reality.

Click here to read more about the history of the NSDA and download the 25th Anniversary Booklet.  

Mary Ann's nephew, Matt Klaber, illustrated the book. It is available to order by clicking here. All the proceeds support the NSDA.

Our first feature is by Susan Reagan (pictured left) talking about unemployment and spasmodic dysphonia. Susan shared, "The process of self-discovery has taken such a long time for me to be truly optimistic and no longer bitter." Read Susan's article on REAL LIFE: Spasmodic Dysphonia and Unemployment by clicking here.

We also want to recognize and express our appreciation to the late Honorable Bill Young, Congressman from Florida. Congressman Young had been a champion of dystonia and his support of the addition of dystonia to the PRMRP list was so important this year.  Remember to mark your calendars for April 8 and 9 for Advocacy Day this year.

My early days of running were difficult but I persisted and slowly improved.  I receive support from a local running group. There were not many females running in the 1970s, as most women my age did not grow up participating in track. I eventually ran a half marathon (13 miles).

In 2010, I started competing in the local Senior Games. I had to qualify in my city, then went to state games and earned the right to participate in National Senior games. Over time, I have won about 60 metals locally and nationally within my age group. When I participate in races, I don’t wear fancy sports outfits and I run in shoes that I buy at Wal-Mart!

Dot shares about her recent Bronze win,"The 800-meter dash was the most exciting for me. Two ladies were very fast and jumped out ahead. One lady was about 3 yards behind me and stayed there until we turned the last corner and had about 40 yards to go. I realized only one of us that could get third place. Suddenly, I heard her footsteps getting closer and I stepped up my run a little. I usually try to do a sprint at the end of my races but it was too early for me. However as she edged in front of me, the crowd yelled and screamed and that helped me take off and we were even but I managed to pull ahead and beat her by about 2 yards. It was exhilarating and so many people told me it was the best race of the day to watch, like a horse race, neck and neck to the finish! Over 10,000 people participated in all the games. It was such an uplifting experience."

Running helps me physically, mentally, and spirituality. When you run, you get endorphins, in your body, which makes you feel good. I also listen to music when I walk or run and feel like I get a double sho of endorphins. 

Around the time I started running, I began having problems with my voice. At first I felt scared and panicky that I would never have a normal voice again. I remembered the running support group that fostered me, so I looked for voice support groups. It linked me up with the National Spasmodic Dysphonia Association.

Life does not always give awards for overcoming challenges. My voice achievements are just as important as my winning metals for running. You can progress beyond obstacles in your life and try new activities. I hope others will be encouraged to keep moving forward!We applaud Dot for all of her efforts and as she always says, "You are never too old!"

This grant is focused on finding a possible genetic cause of spasmodic dysphonia. Dr. Fuchs is using an innovative, powerful technique to screen all genes in a family affected by SD to identify a common gene mutation. To determine whether mutations in this gene contribute to additional SD and other focal/segmental primary dystonia cases, Dr. Fuchs will also screen for this gene in an additional group of volunteers with focal dystonia. This research may reveal a new causative gene for SD and possibly other forms of primary dystonia, contributing to our understanding of the disease mechanism and providing a basis for development of new therapies.

Current Research Grants on Spasmodic Dysphonia funded through the National Institutes of Health

National Institute of Deafness and Communications Disorders Grants

Measuring Communicative Participation in Adults with Communication Disorders

Carolyn Baylor, Ph.D., University of Washington

Neuromuscular Control of the Larynx

Dinesh Khatri Chhetri, M.D., University of California Los Angeles

Neural Modeling and Imaging of Speech

Frank Guenther, Ph.D., Boston University

Neuroimaging of Speech Motor Control

John Francis Houde, Ph.D., University of California San Francisco

Pathophysiology of Spasmodic Dysphonia: a TMS Study

Teresa Jacobson Kimberley, PT, Ph.D., University of Minnesota Twin Cities

Phonetic Influences on Auditory Feedback Control

Caroline Niziolek, Ph.D., University of California San Francisco

Role of Neurotransmission and Functional CNS Networks in Spasmodic Dysphonia

Kristina Simonyan, M.D., Ph.D., Mount Sinai School of Medicine

Imaging Genetics of Spasmodic Dysphonia

Kristina Simonyan, M.D., Ph.D. Mount Sinai School of Medicine

Kinaesthetic Loss as a Marker for Spasmodic Dysphonia

Peter Watson, Ph.D. University of Minnesota Twin Cities

Funded through the National Institute of Neurological Disorders and Stroke

Pathophysiology of Basal Ganglia Disorders

Mark Hallett, M.D., National Institute of Neurological Disorders and Stroke

Dystonia Coalition

Hyder A. Jinnah, M.D., Ph.D., Emory University

Diagnostic Error in Dystonia

Caroline M. Tanner, M.D., Ph.D., Parkinson's Institute

Epidemiology of Dystonia in a Multi-Ethnic Population

Caroline M. Tanner, M.D., Ph.D.  Parkinson's Institute

As of June 1, 2012

Finding the causes of a complex neurological disorder such as spasmodic dysphonia is an enormous task and one that a number of researchers and clinicians have dedicated their lives to pursuing. To understand the etiology of spasmodic dysphonia, we must rely, to a large extent, on the analysis of donated brains. Through the study of these brains, important clues about spasmodic dysphonia can be discovered. When scientists examine samples from donated brains and compare different age groups, genders and so forth, they can begin to gain a better understanding and knowledge of this complicated disorder, which will lead to development of novel therapeutics and treatments. This, in turn, will offer hope for SD-affected individuals and their families.

How will the tissue be used?
Our Scientific Advisory Board Chairperson, Dr. Christy Ludlow, represents the NSDA on the research committee which reviews applications from researchers requesting brain tissue. Since the majority of the scientific research studies can be carried out on a very small amount of tissue, each donated brain provides tissue that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a brain donor, you are giving a very precious gift which will benefit future generations.

How Do I Get Involved?
To enroll in the Dystonia Brain Donation Collective, click here to open up the registration form. Please print it out and either mail or fax it back to the NSDA.

We know that these decisions are not easily made and talking to your family is critical. But we also are confident that further advances can be made in understanding spasmodic dysphonia through this type of research. So we thank you for your consideration of this most generous gift.

Dear Potential Reader,

Twenty-two years ago I was diagnosed with spasmodic dysphonia (SD) and ever since have had a soft voice, with breaks and a tremor, which make it difficult to verbally communicate with people.

Those of us with SD have SD; we aren't SD. We find outlets for our skills and creativity that extend in directions where verbal interaction isn't a top priority, but we need to have better voices to lead normal lives. I'm a nationally published poet, my first book, MARCH, BEFORE SPRING, is now in its third printing.

Wanting to combine my writing with finding a cure for spasmodic dysphonia, I am donating all profits from my second book, BARE BRANCHES, to the National Spasmodic Dysphonia Association to find better treatments and a cure for this neurological voice disorder. BARE BRANCHES contains two poems about living with spasmodic dysphonia.

If you decide to purchase a book, you have my appreciation for helping the NSDA move forward its effort to fund SD specific research, provide support for SD patients and their families and increase awareness of spasmodic dysphonia. Order your copy today!

With warm thanks,
Stephie Mendel
NSDA Board Member
San Francisco / North Bay SD Support Group Leader