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| From taxi to taxi. 3:00 PM. Photo: Jeffrey Hirsch. |
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| Tuesday, June 11, 2013. Rain, and more rain; sometimes heavy, sometimes light but steady, with temperatures in the 60s. Meanwhile, rain or shine, New Yorkers do not stay home if there’s a good party on the horizon. Last night up in Harlem at the legendary Apollo Theater, Chaka Khan was inducted into the Apollo Legends Hall of Fame at their Annual Spring Gala Benefit Concert and Awards Ceremony. Wayne Brady hosted the evening, with performances by Patti Labelle and Mary J. Blige. |
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| Down at Cipriani 42nd Street, fashion was on the bill where the Fashion Institute of Technology (FIT) was holding its annual FIT Awards gala. The black tie evening was honoring George Kaufman, Kay Krill and Stefano Tonchi. Farther west on 42nd Street, at Espace, The Stella Adler Studio of Acting hosted its Stella by Starlight Benefit Gala at Espace. They were honoring Elaine Stritch, George Takei, Stephen Sondheim and Charles Cohen, and Bernadette Peters performed. Rain or shine, I went down to Michael’s to lunch with Bonnie Strauss, co-founder of the Bachmann-Strauss Dystonia & Parkinson Foundation and Paula Stein, the Executive Director of the non-profit. |
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| Next Monday, June 17th, they’re holding their 21st annual Dystonia & Parkinson’s Invitational Golf Tournament known as The Hedi Kravis Ruger Memorial Tournament at the Century Country Club in Purchase, New York. Guest of honor is Bill Geist, the Emmy Award winning correspondent for CBS’ Sunday Morning. Emcee will be Bill Geist’s son, equally as well known to television audiences, Willie Geist, co-host of NBC’s Today Show and MSNBC’s Morning Joe. This is a very popular event that begins witha Buffet Lunch at 11 a.m. (and Golf Range Open for Practice, followed at 12:30 p.m. by a Pro-Am Golf Tournaent (Shotgun Start), finishing up at 5:30 for cocktails, and followed at 6:30 by a Bufffet Dinner and Live Auction (Jacket Required). BlackRock is the corporate chair of the event. |
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| Dystonia is a neurological muscle disorder. It causes uncontrollable, painful spasms in one or more parts of the body. It’s not a well known condition but it does affect more than 500,000 people in North America alone – more than muscular dystrophy, Huntington’s disease and Lou Gehrig’s disease combined. Different forms of it affect the face, the neck, the throat, eyelids, arms, legs or torso. It’s a devastating disease that can appear seemingly out of nowhere in both children and adults. In Bonnie Strauss’ case, her dystonia appeared after the delivery of her second child for which she was given an epidural. It may mean her reaction to the epidural caused it or that it was genetically related (her mother had Parkinson’s).
As Ms. London explains, there is no known cure but only a treatment option like deep brain stimulation (DBS), a 6 hour operation. She writes that she didn’t understand just how the operation worked but it has begun to work in improving her condition. Dystonia was first heard of in public when Michael J. Fox on “Curb Your Enthusiasm” played himself as Larry David’s upstairs neighbor who was disturbing Larry by stomping his feet every night because of the dystonia that comes along with Fox’s Parkinson's Disease. Fox has done more than any public figure to publicize Parkinson's, a disorder of the central nervous system, as well as Dystonia and other neurological disorders, but they are still not well known to the public. Parkinson’s, like Dystonia, can appear at any age but it is most common in people over the age of 50. |
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| Jake Silvermanof Millburn, New Jersey was only 10 when he was diagnosed with early onset Dystonia. Soon the spasms forced him into a wheelchair and out of school. The boy’s spasms affected many parts of his body and five years ago, after failed attempts to control it with medication, he too, like Alison London, underwent Deep Brain Stimulation surgery. This past January, Jake underwent additional surgery to replace a failing stimulator battery in his chest. The Bachman-Strauss Foundation now sponsors “Jake’s Ride For Dystonia Research." This year’s “Ride” will take place on September 29th beginning at Hartshorn Elementary School in Short Hills. |
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| Tonight, Tuesday, June 11th, at the Bitter End on 147 Bleecker Street there will be a special peformance by Anya Parker-Lentz for the benefit of “Jake’s Ride.” 100% of the proceeds will go to the cause. Doors open at 6:30 and show starts at 7. Ms. Parker-Lentz is a childhood friend of Jake Silverman. In 2007, she and Jake teamed up in an international science competition called “Odyssey of the Mind” in which they placed 7th in the world, out of teams from dozens of countries. Their project was called “Mission Impossible.” It was during that time she became aware of Jake’s pain and struggle. She later wrote a song with that title, about Jake, which she’ll be performing tonight at the Bitter End. The Bachmann-Strauss Foundation has raised more than $20 million for research. Recently they had some good, hopeful news – the discovery of a gene that when implanted in mice on which they were doing research, the Dystonia disappeared. As positive as that sounds to someone (like me) with no knowledge of the ways and results of scientific research, implementing that possibility in human in another step with results yet unknown. |
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| Bonnie Strauss told me yesterday that Anne Hathaway, who is a Short Hills girl, has heard about “Jake’s Ride” and has offered to participate in publicizing the event. Research and finding a cure for these complex and troubling diseases are also fighting for public attention. Hathaway potential participation could really help get the word out. To learn more about the Foundation, and the upcoming “21 Years/Coming of Age” Golf tournament next Monday in Purchase, visit www.dystonia-parkinson.org. |
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Contact DPC here. |