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
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
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