|A scene from Bachmann-Strauss Dystonia & Parkinson Foundation's 1st ever Interactive Dystonia & Parkinson Patient Symposium.|
by Susan Sawyers
Bonnie Strauss is one of those people who will do anything for anyone – at least anything that has to with dystonia or Parkinson’s disease.
Earlier this month she organized a full day symposium where medical experts and top alternative practitioners gave the latest advice and information to sufferers of these illnesses, their families, friends and researchers. It was all free of charge, including a lunch of sandwiches, soda and chips that gave the participants time to get to know each other in a relaxed, non-clinical setting.
In the midst of this, Bonnie heard that singer Shania Twain suffered from a voice disorder called laryngeal dystonia and immediately wrote a personal letter to her.
Like the country music superstar, Bonnie has dystonia. In 1979, when she began to experience neck spasms, people told her, “It’s in your head and not in your neck.” For five long years, “I visited all types of doctors, from psychiatrists to chiropractors.”
|Bonnie Strauss at|
|Some of them thought her dystonia was triggered by an epidural she received during the birth of her second daughter. Eventually, a movement disorder specialist diagnosed dystonia. Bonnie knew she had to take action on behalf of the 500,000 people who have dystonia and might not even know it. Her burden became her cause.
“We’ve got to get the word out,” Bonnie told me a few days after the symposium. Seated on the edge of a cozy dark brown corduroy sofa in the library of her bright duplex apartment just west of Park Avenue, she explained her mission: to fund physicians and scientists in order to expedite genetic research and drug discovery and to bring treatments and coping tools to the patients, their families and caregivers.
“Dystonia is a disease without a cure,” said Bonnie. “People should know that it’s not an Eastern European country.”
|The 18th Annual Dystonia & Parkinson Golf Invitational at Century Country Club in
|The generous group of supporters included Fran Ehrlich, Fran Klingenstein, David Freedberg, Karen Freedberg, and Board Member, Felice Axelrod.|
|Anchor & reporter DeMarco Morgan with The Bachmann-Strauss Dystonia & Parkinson Foundation’s Founder & President Bonnie Strauss and Treasurer & Vice President Tom Strauss.|
|Mark Standish, President & Co-CEO of RBC Capital Markets and Board Member of The Bachmann-Strauss Dystonia & Parkinson Foundation, with Event Chairs Ed McBride and Stuart Davies.|
|She believes that in order to bring about change and truly have an impact, she cannot do the work alone. So, in 1995, with the encouragement of her father Louis Bachmann, Jr. and her husband Tom, who today is President and CEO of Ramius LLC, a New York-based investment firm, she established The Bachmann-Strauss Dystonia & Parkinson Foundation. She built a substantive board and collaborates with other Dystonia and Parkinson’s organizations to maximize the Foundation’s efforts.
To date, The Bachmann-Strauss Foundation has given $11 million to fund more than 200 grants around the world. Given continued budgetary cuts to the National Institutes of Health, she feels especially committed to raising and contributing crucial dollars to fund research. “We need more private funding, we need more individuals and corporations to help fund these projects,” said Bonnie. “We’ve got to find cures, and the only way to do it is to get more young investigators to find new avenues for discovery.”
The Foundation hosts an annual golf tournament, dinner and auction. Last year’s event raised $1.3 million and they are gearing up for the next one on June 20. For the past five years, the Foundation has fielded a New York City marathon team. Both events raise awareness and funds for dystonia and Parkinson’s disease research.
|For the past five years The Bachmann-Strauss Foundation has fielded a marathon team. In 2006 10 runners raised over $34,000, in 2007 30 runners raised $125,000, in 2008 25 runners raised $135,000, in 2009 43 runners raised over $164,000 and in 2010 45 runners raised over $232,000. This year, they are looking to field a team of 40+ runners hoping to raise $250,000, which will provide funding for four research grants in the dystonia & Parkinson’s disease fields.
If you would like to join TEAM Bachmann-Strauss, contact Beth Pfeil at email@example.com
or (212) 682-6156.
The 3rd Annual Jake's Ride took place in Short Hills, NJ where over 1,000 individuals came out to show their support within the community, raising over $205,000 towards Dystonia Research. This event has raised over $700,000 over the past three years.
|Otis Livingston, WCBS Sports Anchor, generously emceed the event.|
|Jake Silverman finishing his 5-mile ride.|
|Some of this money goes to support Bachmann-Strauss Dystonia Center of Excellence at Beth Israel Medical Center. The one-stop shop provides patients access to medical care and support services. Not only is it efficient for the patients, but it also enhances the collective efforts of researchers and those who provide the medical expertise.
“Bonnie is extra special,” said Dr. Susan Bressman, who is Bonnie’s personal physician, and is the Chair of the Mirken Department of Neurology at Beth Israel Medical Center in New York City and Professor of Neurology at Albert Einstein College of Medicine. “Instead of hiding, she started a foundation and Bonnie is hands on. Everybody who is involved, from the Foundation’s scientific advisory board to patients she encounters, is made to feel welcome. It’s like a family.”
Earlier this month, at the symposium, Bressman explained to the assembled group the relationship between these two diseases. “Dystonia and Parkinson’s are different clinical syndromes but they often occur together,” Dr. Bressman said. Dystonia patients experience repetitive movements. Parkinsonian’s have the opposite “where you have too little movement and stiffness.” However, “some of the causes of both diseases occur in both.” Dystonia is especially common in people whose Parkinson’s appears early,” said Dr. Bressman.
|Anne Hathaway showed her support for The Bachmann-Strauss Dystonia & Parkinson Foundation where she addressed her role as a Parkinson’s patient in her film “Love & Other Drugs.” The Bachmann-Strauss Foundation invited supporters to join Anne Hathaway over an intimate dinner at Il Postino, followed by a screening of her movie at The Japan Society.|
|Thomas Strauss, James C. Marlas, Anne Hathway, Bonnie Strauss, and Marie Nugent-Head Marlas.|
|Generous supporters joined Anne at the private dinner: Julia Bressman, Anne Hathaway, Dr. Susan Bressman, and Bonnie Strauss.|
|“Bonnie brings these two disorders together because they belong together,” she continued. “They overlap in such an important way, they share anatomical and chemical abnormalities and treatments – and they share the need for genetic counseling.”
Even with the increased knowledge surrounding genetics, little is known about the predisposition or causes of dystonia and Parkinson’s Disease. Laurie J. Ozelius, PhD, an associate professor at Mount Sinai and another speaker at the symposium, is working toward a better understanding. Her laboratory identified a gene (DY1) for the early onset form of dystonia. It turns out that people of Ashkenazi Jewish and Mennonite descent are at risk for the known genetic mutation. But since there isn’t a cure, what can someone do if they are a carrier? This is where the counseling becomes significant. Just because someone has the gene doesn’t mean that he or she will develop the disease.
The daylong program took place on the lower level of The Graduate Center on Fifth Avenue at East 34th Street. The program was divided into two tracks, one for dystonia and the other for Parkinson’s disease. Each offered a half-day presentation with doctors, researchers and health care specialists. The other half was made up of interactive classes in less conventional support and treatments including nutrition; massage therapy, meditation, yoga and T’ai Chi Chih.
|“We wanted to give an all encompassing hands on experience to the attendees -- including some takeaways that they can use on a daily basis,” said Bonnie when asked about the role of alternatives to medicine. “Alternative treatment mitigates the pain, makes the joints flexible and makes the disease more bearable.”
To see Bonnie, you probably wouldn’t notice anything unusual. “I’m very fortunate, because mine [dystonia] is very mild. I’m very active.” She works out four to five times a week with a trainer who knows her body. “We stretch a lot.”
After a full morning of scientific, medical presentations and lunch, I sat in on a Qi Gong (chee gong) class led by Kenneth Gray who instructed five or six of us in gentle body motion, breathing and meditation. One of the participants, Alison, who was probably in her 30s, had dystonia in her trunk, just below her neck. Although she is able to sit and run with a straight back, she tends to curl forward when standing. This makes doing seemingly simple things, like opening a door, especially difficult. Kenneth demonstrated several standard techniques of movement, with the group of six or seven of us mirroring his efforts. For the closed-door scenario, his purpose was to “get Alison to use her legs and her center,” he explained. “It’s a grounding movement.”
|“Stand with your feet apart, one leg in front of the other with the weight on the front foot,” Kenneth said. “With whichever hand is in front, reach for the door, shift your weight onto the back foot.” The class mimicked the instructor’s motions. “The thing is to find your own solution,” said Kenneth. In other rooms patients and their families were learning about diet and stress relief.
And how does Bonnie feel about her work? Some days she says she’s down because she thinks of the work that has yet to be done. She remembers her mother and grandmother, both of whom had Parkinson’s disease. “But things were different then. Some days I’m optimistic.” That’s because, “You never know what’s going to bring on the discovery. I mean look at Botox.”
And she isn’t joking. Botulinum Toxin, the wrinkle remedy, can also be injected into dystonia-affected muscles to relieve pain and contractions.
|Bonnie’s primary focus is raising awareness for dystonia and Parkinson’s disease but her other passion is her family. She and Tom have three children and five young grandchildren - who range in age from seven months to eleven years old. “I do everything with them. I take the three-year-old to a gym class once a week and another granddaughter to a music class. We love to go to the Museum of Natural History, the Park or stay home and listen to Mary Poppins, The Sound of Music and Annie.”
But back to her purpose. “I don’t want the word dystonia to get lost,” said Bonnie. Although the personal letter to Shania Twain was delivered, there has not been a response, Sandra Cahn (Sandy), the Executive Director of the Foundation, told me. But echoing the sentiments of Bonnie, anyone who suffers from or knows someone who has dystonia or Parkinson’s disease can find information and support services online: www.dystonia-parkinsons.org.
Sandy Cahn humbly expressed gratitude to the Foundation leadership, its scientific advisory board and special advisors. Maybe Shania Twain would like to come on board. It’s a supportive and dedicated group.
[In life] “you have to be positive, in order to make progress and make something good happen,” said Bonnie. I hope we find a cure and I will do everything that I can to help make that happen.”