News Archive

Bay to the Breakers Race Raises Over $3,000 for SD Research

It all started as Board Member Stephie Mendel's "wild fundraising idea" to have an NSDA team in the upcoming Bay to Breakers Race on May 17 which is the day after the NSDA Symposium. With her enthusiasm and that of the other Board members, Greater Sacramento Area Support Group Leader Jan Lant took up the cause and found eager runners in her children to represent the NSDA. More...

“I was shocked and so excited when Christie (daughter, 40's) and Matt (son-in-law) agreed to participate in the Bay to Breakers run/walk fundraiser on behalf of the NSDA. When they responded that they would do it if we could just watch our granddaughter (which was like asking kids if they want ice cream), we were overjoyed! Because the symposium is in San Francisco near home this year, they said that they welcomed the opportunity to support me and the good cause of the NSDA,” Jan shared. The race, Bay to Breakers, is the oldest consecutively run annual footrace in the world, a staple to the City by the Bay since May 1912.

From the start of Jan’s SD journey, her children have always been there for her, from driving Jan to her first botulinum toxin injection appointment to continually being supportive and understanding. Jan shared, “Now that it's been 10 years since that treatment, I am so grateful for their readiness to support me and the NSDA, which was the other part of the lifeline that connected me to others with SD, to learn about it, make the most of it and to help others." Jan, her husband, Dennis Delgado, and their children will join us at the NSDA Symposium.

For those of you who attended the first ever NSDA symposium in the Bay Area, you saw firsthand how NSDA founder, Larry Kolasa, masterfully encouraged donations from the generous attendees for Team NSDA in the Bay to Breakers Race the following day. Within fifteen minutes, over $3,000 was raised! Run/walkers, Matt and Christie Cervantes, in their NSDA t-shirts with a big, sparkly “S” on the back of one and “D” on the other (along with their darling daughter), were amazed by the outpouring and generosity of the SD community. By simply having the two participants pass the NSDA “Running for Research” hats around the room, these funds were raised for the NSDA.

Sporting their NSDA shirts and hat for awareness, along with a pink tutu and polka dot socks by Christie to blend with the crazy, colorful crowd, they left the hotel at 6:15 by charter bus for the Embarcadero Hyatt starting area. The weather was overcast, comfortable and perfect for the event. The course was packed and to run required weaving or hugging the sideline, so they did a combination of walking and running together. They also met up with friends in the race from their town along the way.

Amid the hustle and bustle, there were festive costumes of Superman, Speed Racer, Elvis sightings, giraffes, pirates and a 2015 bride and groom, to name a few that were not X-rated. Adding to the revelry were vans playing music along the way and fraternity house type parties on Hayes Street Hill, which was the steepest climb. As they entered the Golden Gate Park area, they actually spotted buffalo and llamas! Only near the Pacific “breakers” at the finish line was it cooler with the ocean breeze. They finished after 2 hours, said it went by fast, was fun and they were back at the hotel by 12:30 p.m.
Matt and Christie want to express their appreciation to the NSDA for the chance to participate in this successful fundraising event and being able to check the Bay to Breakers off their bucket list! And we thank you for your support!

SAVE THE DATE for the 2015 NSDA Symposium

The National Spasmodic Dysphonia Association is dedicated to providing support and education for those living with spasmodic dysphonia and we are pleased to announce the 2015 Symposium on Saturday, May 16, 2015, in South San Francisco. More...

The meeting will bring together expert faculty to discuss the latest information on spasmodic dysphonia along with a very special Keynote Speaker, Dilbert Creator Scott Adams. In addition, it will provide an opportunity for people with SD to network and learn from one another. Click here for more information.

NSDA Celebrates 25 Years

A video Message from Scott Adams creator of "Dilbert" 
The National Spasmodic Dysphonia Association was established as a result of the foresight and desire to help people cope with spasmodic dysphonia. It was brought to reality with the help, dedication and compassion of our Founding President, Larry Kolasa and Daniel Truong, M.D.  More...

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.  


New Children's Book on SD

New Children's Book on SD

Explaining spasmodic dysphonia to children can be difficult. They may not understand why their parent or grandparent's voice suddenly sounds different. Greater Dayton, OH Spasmodic Dysphonia Support Group Leader, Mary Ann Keller, took on this challenge. "My Dad had Spasmodic Dysphonia," tells the story of a young boy learning about the changes in his dad's voice and the impact on their family. More...

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

REAL LIFE: Spasmodic Dysphonia and Unemployment

Each person's experience with spasmodic dysphonia is different, yet there are common threads that can connect one another. We have a new feature called "Real Life" written from the point of view of the author. More...

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.

More Funding Available for SD/Dystonia Research

The appropriations bill passed recently by Congress included dystonia on the list of eligible conditions for the Department of Defense (DOD) Peer Review Medical Research Program AND this program received an increase of $150 million over the FY13 level!  This increase in funding will allow for more research to be funded and/or for research to be funded at higher levels. It demonstrates the power of advocacy.   More...

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.

Living Beyond SD: Dot Sowerby

Living Beyond SD: Dot Sowerby

NSDA Past President Dot Sowerby has been a wonderful example of living beyond spasmodic dysphonia. In her book, "Speechless" she chronicles her journey with SD, but these days you can find her lacing up her running shoes and winning races. Dot shares, "My journey in running spans from when I was in my late 40’s and jogged around one block, to this summer at age 80, competing in the National Senior Games in Cleveland OH, where I won a silver medal in the 5K (3.1 miles) and a bronze in the 800 meter race (1/2 mile) for women, ages 80 to 84.     More...

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!"

New Grant Co-Funded by the NSDA

The NSDA is pleased to announce that it is jointly funding a grant on genetics and spasmodic dysphonia with the Dystonia Medical Research Foundation. The grant, "Identification of a Spasmodic Dysphonia Gene using Exome Sequencing," is being led by Tatiana Fuchs, Ph.D., with Laurie Ozelius, Ph.D., serving as a significant contributor. Both researchers are located at Mount Sinai Medical Center in New York. More...

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.


Increase in NIH Funding of SD Grants

Currently, there are 13 grants for SD research funded through the National Institutes of Health. This is a huge increase over the last five years when there have been only a handful of grants specifically on SD. This new research is focused on a wide spectrum of areas including neuro-imaging, epidemiology and pathophysiology. Scientific Director Dr. Christy Ludlow lauded the efforts of the NSDA and its advocates in raising the profile of SD in the research community. Dr Ludlow strongly encouraged all to keep up the work of advocacy and support for SD as it is making a difference. More...

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

Help Advance Spasmodic Dysphonia Research Through Brain Donation

The National Spasmodic Dysphonia Association, working with other organizations of the Dystonia Brain Collective, is proud to partner with the Harvard Brain Tissue Resource Center to help solve the mystery of spasmodic dysphonia and other dystonias through brain donation. The Harvard Brain Tissue Resource Center is responsible for collecting, preserving, and distributing human tissue to qualified scientific investigators who are conducting important spasmodic dysphonia research. More...

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.