Meet the Editorial Board: From the Dystonia Dialogue:
Ever wonder about the people behind the Dystonia Dialogue magazine? The Editorial Board is a group of volunteers that oversees the content of the magazine to make sure it reflects the interests and needs of the dystonia community. They are individuals living with dystonia, parents, siblings, and advocates. They represent primary dystonias, secondary dystonias, focal forms, adult-onset, and childhood-onset.
Tell us what you think of the magazine! Email the Editorial Board at firstname.lastname@example.org
I was diagnosed with generalized dystonia at age 15. With the assistance of a bicycle, I attended Kenyon College where I graduated with a degree in History. After graduation, I moved to Washington, DC where with the assistance of a cane and the DC taxi system, I worked for candidates running for Congress, Senate, Governor, and President. I now live in Chicago and work at a public relations consulting firm, and with the assistance of deep brain stimulation a few years ago, I no longer need the assistance of bikes, canes, and cabs.
My younger brother developed severe generalized dystonia as a child and was treated in the 1950s with stereotactic brain surgery. I have followed the success of the DMRF since its inception and have been a member and leader of the Kelowna, British Columbia support group. As an ophthalmologist, I treated blepharospasm patients with botulinum toxin when it first became available in Canada. I was surprised to develop adult onset generalized dystonia in my fifties and retired from practice because of this but remain interested as both of my children are ophthalmologists. Recent years see my wife Barbara and I busy with 'extreme grandparenting' for three healthy toddlers.
I am a media/TV/radio/radio network veteran of 35 years located in Colorado Springs, Colorado. This included being a TV meteorologist from 1989-2003 at the local CBS affiliate, production director and chief forecaster for the Business Radio Network and local radio stations, and voice work for car commercials broadcast in markets around the country.
I was diagnosed with oromandibular dystonia in 1995 after nine months of seeing various neurologists in Colorado Springs and Denver. I was off the air for four years and returned to the air in the spring of 1999 after botulinum toxin injections and oral medications, and continued broadcasting until 2003 when I had to leave the air again due to variability of speech quality. I created the website airportandtraveldelays.com and predicted airport delays in advance based on my weather forecasts for key hub cities around the US and Canada from 2006-2008.
Today I am the media columnist/reporter for The Gazette in Colorado Springs and manage the internet message boards for WFMT/WTTW public radio/TV in Chicago. I am a longtime community volunteer and currently am on the Citizens Advisory Board, Gold Hill Division with the Colorado Springs police department. I am the president of my homeowners association and manage a $180,000 a year budget.
I am the DMRF Vice President of Awareness and Activities as well as the Chair of the Editorial Board. My husband Dennis and I became involved in the DMRF in 1978 when our son Art was diagnosed with generalized dystonia. We also helped found the Chicago Chapter of the DMRF and remain closely involved by attending meetings and hosting an annual letter-writing fundraising campaign. I’m also a member of the DMRF Public Relations Committee. My husband and I live in Highland Park, Illinois, a suburb of Chicago. In our spare time we enjoy spending time with our grandchildren and traveling around the world.
I have been a DMRF Board Member for five years and have served on the Editorial Board for the past three years. Formerly in the textile business, I live in Los Angeles with my husband, Mark, (who serves as the DMRF's Treasurer) and our children, 14-year-old David and 11-year-old Rachel. David was diagnosed with dystonia at age eight. Our whole family is extremely committed to supporting research. In addition to fundraising year round, last year we had the unique opportunity to visit DMRF-funded investigators in their lab and thank them for their efforts to benefit the dystonia community.
I was born, raised, and educated in the Chicago area. After a brief stint as an educator, I joined the Air Force and became an intelligence officer. I then spent the next 20 years going to interesting places, meeting interesting people, and doing interesting things. After retirement I continued my research efforts as a deputy project manager at NASA's Jet Propulsion Laboratory. It was during this period that I was struck with spasmodic dysphonia. My inability to speak effectively ended my professional career. Like so many others I then spent years trying to get a diagnosis. Finally, by using the internet, I diagnosed myself and was able to get to a movement disorder specialist and proper treatment. I vowed then to do what I could to prevent others from going through what I did and got involved with the DMRF. My main hobby is target shooting, and I write a newspaper column, magazine articles, and contributions to technical anthologies about the same. I also write poetry and have won several local competitions and participate in readings from time to time.