News Archive

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.  

 

Johnny Bush to perform at the Fall Voice Conference

Join us on Friday, October 24, for a special concert featuring NSDA Honorary Board Director and Country Singer Johnny Bush at the Fall Voice Conference which educates healthcare professionals on the management of voice difficulties. Johnny, who has spasmodic dysphonia, will be both entertaining and educating the audience about the disorder. Sign up here. More...

NSDA Honorary Board Director and Country music singer Johnny Bush will be performing at the Fall Voice Conference on Friday, October 24, from 5 p.m. to 7:00 p.m.  We expect Johnny to start playing around 5:30 - 5:45 p.m.

The concert will be in the Hidalgo Room located on the Ballroom level at the Westin Riverwalk Hotel located 420 W. Market Street in San Antonio. This event is being sponsored by the Fall Voice Conference so the signage for this event will be under that name.

Most of the participants will be attendees of the Fall Voice Conference which includes otolaryngologists, speech language pathologists, voice instructors, and other professionals interested in voice.

Working with the organizers of this event, including Dr. Blake Simpson, we are excited to be able to welcome local members of the NSDA to hear Johnny Bush play and meet others with SD. Representatives from the NSDA that will be attending include President Charlie Reavis, Board Director Gwen Sims Davis and Executive Director Kimberly Kuman.

If you are planning on attending, and haven't registered yet, please click here. There is no charge to attend the conference, but we ask that you register.

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.

Dilbert Creator Scott Adams Shares His Experience with Spasmodic Dysphonia

Dilbert Creator Scott Adams Shares His Experience with Spasmodic Dysphonia

For more than 25 years, the cartoon Dilbert has amused and entertained audiences thanks to its creator Scott Adams. “After working at Crocker National Bank, my first corporate job, I assumed that all the craziness going on there could not be going on anywhere else,” he said. It wasn’t until he moved to Pacific Bell that he realized everything looked the same. That freed him to create the character Dilbert with the correct assumption that his experience was common to other people. After that, the cubicle-bound engineer working for an unreasonable boss at a nameless company was born. Scott recently published a new book entitled, How to Fail at Almost Everything and Still Win Big: Kind of the Story of My Life. The larger context of the book is how to embrace and learn from failures in order to achieve success, but his struggle with spasmodic dysphonia is the narrative vehicle that brings it together in the book. Scott shared his experience with SD in an interview with the National Spasmodic Dysphonia Association. We are also excited to announce that Scott Adams is an Honorary Board member of the NSDA. In this position, Scott will be extremely helpful in our mission to raise awareness about spasmodic dysphonia. More...

Scott was used to losing his voice. At least once a year, he would have a bout with allergies and laryngitis resulting in this, but in 2005 something was different. It had been over a month, and his voice still had not returned. Concerned, he scheduled an appointment with his doctor and this turned into visits to multiple doctors, MRI scans, treatment for acid reflux and strep throat, and finally a referral to a psychologist. After all, wasn’t it a little “crazy” that he could talk fine to his cat and to himself? The recommendation was valium to relax him, but Scott passed on that option and kept looking. He shared,"That felt wrong. I was used to speaking to large groups, and I didn't feel any more nervous in front of people."

Eventually Scott made the connection to his voice problem with his past issue with his hand, a focal dystonia called writers cramp. After typing in vocal dystonia into Google and hearing "his" voice in a video, he discovered that his problem had a name, spasmodic dysphonia. When he was referred to a doctor who specialized in spasmodic dysphonia, his diagnosis was confirmed within seconds of speaking. Scott tried botulinum toxin injections for several sessions but the results were limited. He later learned that one of his vocal cords was out of alignment which could have affected the response. For him though, there were too many variables with the injections, including dosage and placement. Scott was hoping to find a long-term solution to his spasmodic dysphonia and did not want the symptoms to be masked by the impact of the injections. That set him on a varied path of treatments including acupuncture, diet, certain types of cough syrup, relaxation, speech therapy, but still no definite relief of the SD symptoms.

During this time Scott found an outlet by writing his blog. He said, “The blog became incredibly important to me because you don’t feel connected to the world just because you are listening. You feel connected when you know you have been heard. Since I couldn’t do that in person, the interaction in the blog became hugely satisfying and was important to my survival. I was being understood so that kept my spirits up.” Three years later Google proved most effective again in his search for answers. His alerts had been set to receive updates on “spasmodic dysphonia” and through one, he learned about a surgery in Japan. After discussing this procedure with his doctors, he was led to an option much closer to home. An appointment was scheduled with Dr. Gerald Berke, Professor and Chair in the Department of Head and Neck Surgery at the University of California in Los Angeles (UCLA).

Scott jokes that it took about three seconds for Dr. Berke to confirm his SD diagnosis after he said “he-llo.” This appointment offered a new treatment option, a surgical technique called Selective Laryngeal Adductor Denervation Reinnervation (SLAD-R). Dr. Berke, who pioneered this procedure, laid out the risks very carefully. Worthwhile improvement in voice had been seen in about 85% of the cases, but he warned that 15% did not benefit. That 15% ran the risk of not being a candidate for future treatments. Scott shared, “While that was a scary possibility, the quality of my life was so affected by my inability to speak. I had to take this chance because the alternative was a life I didn’t want.” His surgery was scheduled.

A month later, Scott underwent the operation. “The interesting aspect of this procedure is that it doesn’t penetrate to the inner structure of your throat. He is not ‘playing’ with your vocal cords, but rather rewiring the circuitry of the nerves in the front of the neck,” Scott said. It would take about three and half months until the new nerves regenerated and the voice came back. Scott was trying to plan his follow-up visits and was told, there were none. It either works or it doesn’t, which he found amusing.

The recovery was not easy. Scott said he dreaded feeling hungry because his swallowing was affected for months. He tried to speak during those months, but his brain was still not connecting with his vocal cords. All he could do was whisper. But he was not discouraged, because he kept focusing on the final outcome. And then, three and half months after the surgery, almost to the day, his wife, Shelly said something to him, and he spoke back. In disbelief, she said “You just talked.” And while weak and breathy, it was actually speech.

In the months that followed, his voice steadily improved. Scott shared, “My affirmation at the time was ‘I will speak perfectly’ if such a thing even exists. I had a weak nasally voice before I ever got spasmodic dysphonia, but after the surgery, the quality of my voice was substantially better than before SD.” Dr. Berke hypothesized that he might have had “latent” spasmodic dysphonia all his life, but ended up with a far more functional voice than ever before. Scott concluded, “And life has never been more enjoyable or satisfying. But one of my big motivations for writing this book was that I wrote it, in part, for the person in the middle of nowhere who has lost his voice to spasmodic dysphonia.”

Hear Scott's voice by clicking on the links: Pre-surgery and Post-Surgery

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

Brain Donation for Spasmodic Dysphonia

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. More...

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. Scientific Director 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 a very large amount that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a potential brain donor, you are giving a very precious gift which will benefit many future generations.

The NSDA appreciates the response from the community. Based on questions received, below is an outline of the process involved. When the brain donor passes, the Next-of-Kin or Legal Representative contacts the Harvard Brain and Tissue Bank. Once the staff at Harvard receives the notification phone call, they will ask specific questions about the donor and then the staff person will make contact with a pathologist in the donor's local area (hospital, funeral home, etc, depending on where the donor is). Harvard staff will make arrangements for the recovery to take place. All of this needs to be done soon as possible. The NOK or legal representative needs to authorize the brain recovery to take place and this can be done via phone or fax. Since the recovery is done as close in time as possible to the donor’s passing, it does not impact funeral or memorial services. In addition, the entire brain is removed but it is done discreetly so as not to affect the outward appearance of the donor, allowing for a viewing during the memorial service. The brain needs to arrive at Harvard within the 24 hour period after passing.

The NSDA assumes any and all costs, so there is no expense to the family. The family will be asked to complete a questionnaire about the donor and will also be asked to grant permission for the donor’s medical records to be sent to the Brain Bank. The medical history and questionnaire are both important so the Brain Bank can reliably give researchers the correct tissue samples needed for their specific studies. When this information is received and after the tissue has been analyzed by the neuropathologist, the family will receive a copy of the final neuropathology report.