A Personal Profile of Bonnie Strauss, Founder & President
In 1979, Bonnie Strauss began experiencing neck spasms that forced her to seek medical attention. For five long years, Bonnie visited all types of doctors from psychiatrists to chiropractors. It wasn't until she met a woman who recognized the symptoms and sent her to see a neurologist in New York City, who properly diagnosed Bonnie with Spasmodic Torticollis, a form of dystonia, characterized by involuntary contractions of the muscles in the neck. Bonnie's mother and grandmother were both diagnosed with Parkinson's disease and she strongly believed there was a link between dystonia and Parkinson's disease. Bonnie wanted to make a difference for other people who suffered with dystonia and Parkinson's.
With her personal dedication, she created the Annual Dystonia Golf Invitational, which first took place in September 1993, at the Century Country Club in Westchester, New York. To date, this outstanding golf event continues to grow and raises well over a million dollars each year, funding new research grants. In 1995, Bonnie established The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. with her father Louis Bachmann. Her mission was and continues to be to fund cutting-edge research for dystonia, Parkinson's disease and other movement disorders and to raise awareness in the public and the medical community.
In 1997, Bonnie started an annual theatre benefit to raise funds to support Parkinson's disease research, so as to facilitate synergy amongst various basic studies into neurological movement disorders. For instance, surgical applications such as "Deep Brain Stimulation" have benefited both patients with dystonia and Parkinson's disease. Bonnie is especially proud of these accomplishments, and most importantly, has recognized the challenges of fragmented clinical care. She said, "To address the complex problems facing patients, we established the first Dystonia Center of Excellence at Beth Israel Medical Center in 2009.
Since then, three new Centers of Excellence have been established for dystonia and Parkinson's disease across the country. This is just the beginning of many such Centers. "From personal experience, living with dystonia, I can tell you that waiting for doctors, test results, and appointments, is often confusing and exhausting. These Center reduce the stress on patients and their families with a focused, centralized approach to treatment.
Over the years, the Foundation has established scientific conferences such as the annual Think Tank. This Think Tank brings together the greatest scientists from all over the world to discuss current issues in research in the field of dystonia and Parkinson's disease. In addition, the Foundation established a Dystonia and Parkinson's Disease Symposium for Patients and Caregivers. This free event to the public gives patients and their caregivers the ability to learn the latest in research and therapies to help them lead a better quality of life.
Through the Foundation Bonnie has raised millions of dollars for medical research for both dystonia and Parkinson's and has increased awareness of this orphan disease, dystonia. She is determined to put dystonia on the map and continues to strive for better treatments and ultimately a cure for these deblitating disorders.