News Archive

Dystonia Advocacy Network Fiscal Year 2012 Appropriations Action Alert

On July 26, the House Labor-HHS-Education Appropriations Subcommittee is scheduled to mark-up its FY12 spending bill. This is the annual bill that funds all agencies within the Department of Health and Human Services (National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration, etc).  With the current budget allocation provided for this measure, the subcommittee is expected to produce a bill that spends significantly less on programs under its jurisdiction than last year.  Therefore, it is important for you to contact your representative this week and encourage him/her to support the Dystonia Advocacy Network. More...

Welcome to the NSDA Website!

Thank you for visiting the new and updated NSDA website! We hope that you like the changes and ask you to take a survey and let us know what you think! More...

This site has a fresh new design, is more functional, and features expanded sections on Spasmodic Dysphonia, Treatment, and Support, along with new sections on Research, Advocacy, and Membership. We also now have a video gallery and are working on the photo gallery. Listen to more voice samples and meet some of our members on the home page.

Visit to Local NSDA Support Group Help Woman Find Her Voice

Yvonne Kaminski was urged by her daughter, Jessica, to attend a meeting of the local NSDA Spasmodic Dysphonia Support Group in Milwaukee, WI. It was there that she received encouragement to give treatment another try and was referred to Dr. Joel Blumin. More...

The results from that visit made the local news, including a story in the publication, "On Milwaukee" and an interview with the news station, WTMJ, in Milwaukee. Yvonne also shared her experiences with the NSDA in this interview.

NSDA Honors Diane Rehm

After 37 years on National Public Radio, NSDA Honorary Director Diane Rehm retired from hosting her radio show in December.  More...

To mark this special occasion, DC Metro SD Support Group Leader Lois Jackson presented a book of letters from our dedicated SD community to express appreciation for her courage, leadership, inspiration, willingness to participate in NSDA conferences, and publicly "carry the banner" raising awareness of SD. Lois shared that Diane was very touched and appreciative of the gift and sentiments. You can still hear Diane as she just started a podcast called "On My Mind." Click here to read more about Diane's career on NPR.

The Complexities of Spasmodic Dysphonia brought to light in the Wall Street Journal Article

A recent article in the Wall Street Journal entitled, "The Brain Wiring Behind a Frustrating Speech Disorder," is helping to raise awareness about spasmodic dysphonia. 
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With the focus on the complexity of understanding SD, it features researchers who are approaching SD in different ways, including Dr. Kristina Simonyan. Also included is the personal side of SD. Tommy Johnson, who has lived with SD for over three decades talks about the challenges of SD and how he is contributing to the research. Click here to read the article online or download a PDF. We encourage you to share the article to help continue to raise awareness!

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

View the SD Reseach Update Webinar

The webinar that aired on November 7, 2012, is now uploaded to the NSDA video gallery and the NSDA YouTube Channel. It has been split into three sections for easier viewing. Special thanks to our presenter, Dr. Christy Ludlow, NSDA Scientific Director. More...

We had over 125 attend this first webinar and we are excited to connect with the SD community in new ways. We hope you find this information useful and informative. Thank you for your continued support of the NSDA!

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.

Snowdon Climb a Huge Success

Snowdon Climb a Huge Success

By Anne McDougall: On 24th June 2012, thirty one eager but mostly inexperienced individuals, set out to climb Mt Snowdon in North Wales, UK in aid of the National Spasmodic Dysphonia Association. The group comprised family, friends and colleagues, and consisted of all age groups, including a little girl aged seven and a dog called Ruby. The climb of Snowdon (the highest mountain in England and Wales, elevation 3560 feet or 1085 m) was organised by Anne McDougall, an SD patient, with her husband John taking up the challenge on her behalf. More...

We all met in the car park at the bottom of the mountain and after a few group photographs the ascent commenced in cloudy damp conditions. The weather in the UK had been atrocious for weeks  but no one expected the conditions on the mountain to be quite so challenging.  Very soon on the way up the conditions began to deteriorate; the cloud came down, the rain started and the mist rolled in. 

These intrepid supporters all pushed bravely on as I passed, waving at them from the relative comfort of the rickety, cramped, damp old train. On my arrival at the top there was thick fog, driving rain and it was blowing a gale. I imagined that many of the group would have turned back but with true grit everyone eventually arrived at the cafe at the top. All in good spirits, cold and wet, but laughing about their experience and their individual struggles to reach the top. John made sure everyone had arrived safely, gallantly going back to find and help a few stragglers.

Once everyone was refreshed with a hot drink, many were eager to start their descent, as the return can be more challenging that the upward climb. I began my journey down by train feeling inspired by all of them, and also feeling somewhat guilty that they had all put themselves through this for me.

At the bottom the weather had improved dramatically; the sun was out and it was warm. Later during the afternoon individual small groups began to arrive at the bottom and gather in the square for a drink, tired but elated by their success and willing to swap their experiences with fellow trekkers. One topic of conversation was “What shall we do next?”

I am inspired by them all and I thank every single one of them for their time, energy and contribution in making this a very successful fund raising event. Our aim was to have raised a few thousand  dollars for NSDA – to help finance their mission of awareness, research and support  for people with SD.

Photos of the climb are posted in the Photo Gallery section: http://www.dysphonia.org/photogallery.php

2012 Western Regional Symposium Update

The NSDA Western Regional Symposium was well-attended with people from around the United States along with attendees from Canada, Mexico, and New Zealand. More...

We had some of the leading experts in the spasmodic dysphonia and dystonia community speaking including:

Dr. Gerald Berke, Chairman of UCLA Head and Neck Surgery

Dr. Laurie Ozelius, Associate Professor in Genetics and Genomic Sciences and Assoc. Professor in Neurology at Mt. Sinai School of Medicine in NY

Dr. Christy Ludlow, Professor of Communication Services and Disorders and Director of the Laboratory of Neural Bases of Communication and Swallowing at James Madison University in VA

Presenting on the latest updates in treatments, genetics, and research, these three doctors also participated in a spirited questions and answer session.

After lunch, Dr. Tom Hofmann, Chair of the Psychology Dept. at Hodges University in Florida, talked about the Quality of Life with SD.

A full summary of the meeting will be available shortly. We thank all that attended the meeting to make is a success.