Dystonia is a painful and life-altering movement disorder that officially affects at least 300,000 people in North America. Some experts say the figure is closer to 750,000 to 1 million people. There is no definitive test, its symptoms are similar to those of other illnesses, and many people are misdiagnosed. One third of dystonia patients are children.
My daughter, Joanna, has dystonia. She was a perfectly healthy child who danced and sang; now she is an adult in a wheelchair and can no longer dance, walk, speak, eat, drink or take care of herself.
My husband, Len, and I have had the mission of increasing funding for dystonia research and raising awareness in both the medical profession and the general public.
We have run the support group that meets at CentraState Medical Center for 16 years, have organized Dogs for Dystonia and Dine for Dystonia events, and have appeared in newspapers and on radio and television.
Now, new help has arrived. Congressman Chris Smith (R-NJ) has pledged his assistance.
Each year, a large group of dystonia advocates travels to Washington, D.C., to educate legislators about dystonia. We usually speak with staff members who advise the officials about health issues. This year, we were able to schedule a 10-minute meeting with Congressman Smith.
Although he knew little about dystonia, our meetings in his office motivated the congressman to be the lead on letters to the National Institutes of Health (NIH) and the Department of Defense (DOD) requesting more funds for dystonia research. He listened intently for over 45 minutes. He then asked, “What can I do to help you?”
Help us raise awareness and increase research funding!
On Sept. 29, Congressman Smith hosted the first ever legislative briefing about dystonia. It was attended by representatives from legislative offices, the NIH and the Dystonia Medical Research Foundation. We were privileged to speak before this group.
I spoke about the effects of dystonia on Joanna and the rest of our family. Joanna had been seen by eye doctors, neurologists, psychologists and other medical practitioners in our 15-year search for a diagnosis. That length of time is not unique. Even many neurologists do not recognize dystonia and do not send the patient onward to a movement disorder specialist.
Len reported on several stories that had been told to him by support members and others around the country. The stories included a suicide attempt, job loss, poverty and desperation. The common threads among their stories were the many years it took to get an accurate diagnosis and the difficulty getting referrals to movement disorder specialists.
Congressman Smith said, “Research makes all the difference in the world, but $12 million to $13 million at the NIH per year for dystonia is just not enough.”
To put that amount in perspective, as found on the NIH website, West Nile Virus receives $48 million in funding at the NIH, American Indian/Alaskan Native research, $172 million, and smallpox (thought that was eradicated), $24 million.
These are worthy research projects, but $12 million to $13 million is not nearly enough when at least 300,000 people have been diagnosed and many more are undiagnosed. On Nov. 7, a meeting of the Central Jersey Dystonia and Support Group was held at CentraState Medical Center, our longtime host and supporter. Our special guest was Congressman Smith and entertainment was provided by the Liberty Oak Chorus of Sweet Adelines International, the current New York-New Jersey champions. Members of the Township Committee in Freehold Township also attended.
Congressman Smith addressed our group and listened with great sensitivity to the life stories offered by our members. He later wrote, “What I saw was compelling — many patients present were unable to walk, move, speak or see because of this disorder.”
He pledged that “through advocacy and briefings, and other activities, my colleagues and I in Congress will continue to bring attention and resources to this devastating and little-understood illness.”
I would like to thank Congressman Smith, CentraState Medical Center, the Township Committee in Freehold Township, the Monmouth County freeholders and all who have helped us through the years, and especially our group members, families and friends. Research and awareness is the key to the cure.
Janice Nachbar of Freehold Township is the mother of an adult dystonia patient. She has co-led the Central Jersey Dystonia Support and Action Group for more than 16 years, has organized numerous events for dystonia, lobbied and testified in Washington, D.C., and has spoken to groups on behalf of the Dystonia Medical Research Foundation.