By Cindy Mindell
RIDGEFIELD – A crowd of teens, many bedecked in Hawaiian leis and grass skirts, are dancing in a hotel conference room, led by a trio of girls holding hand-lettered signs, “DANCE,” “SHAKE,” “DONATE.” The song playing over the loudspeaker, drowned out by the throng, is “Shake It Off” by Taylor Swift.
Judging from the smiling faces and festive atmosphere, this is obviously a fun get-together for the dancing participants. But it’s much more than that: it’s also the national “Dance/Shake/Donate” fundraising challenge for Parkinson’s disease, born in Ridgefield as the brainchild of a BBYO Sabbaba girls’ chapter member. The 300-plus teens in the YouTube video represented the 15 chapters of BBYO Connecticut Valley Region (CVR) at the region’s Fall Convention in November. There, the CVR members adopted the Dance/Shake/Donate challenge as their annual “Stand UP” community-service initiative.
The idea for the fundraiser was originally conceived by Sabbaba member Zoe Butchen, a freshman at Ridgefield High School who got involved in BBYO at the urging of her older brother, Cole Butchen.
“After I attended a meeting [in 8th grade] I fell in love and decided to officially join from there,” Butchen says. This year, she is serving as Sunshine Girl on the board, tasked with recognizing fellow members for hosting events and publicizing members’ birthdays via social media. She has also helped lead some chapter meeting programs.
A year and a half ago, Zoe and Cole’s father, Jeff Butchen, was diagnosed with Parkinson’s disease. The chronic, progressive movement disorder affects at least 500,000 people across the U.S., according to the National Institute of Neurological Disorders and Strokes.
“When I first found out, I wanted to see if I could do something to make it better for him and other people living with the disease,” says Butchen, who has taken dance classes since age three. “Our family joke has been for dad to ‘shake it off,’ so when the song ‘Shake It Off’ by Taylor Swift came out and I watched the video of all the people dancing and shaking, I thought that it would be a perfect thing to use to raise money and awareness.” Zoe shared the idea with her family and they brainstormed how to turn it into something bigger, launching “Dance/Shake/Donate” in October. Individuals and groups videotape themselves dancing to “Shake It Off” and then post the video to Facebook or YouTube, donate to the Michael J. Fox Foundation or the American Parkinson Disease Association, and challenge at least three other people or groups to follow suit.
Now the fundraiser will get a global boost when BBYO International launches “Marathon Madness” at its international convention in February, an event inspired by “Dance, Shake, Donate.” Zoe will serve as teen chair of the month-long, movement-wide philanthropic initiative, which will also involve yet-to-be-named music celebrities.
“Our teens are enjoying being a part of Zoe’s campaign,” says BBYO CVR director and area field director Josh Cohen. “We always have teens working on different causes or with different organizations but watching Zoe’s grassroots efforts have been very inspiring for all involved.”
The Butchens – which also includes Zoe’s mom, Heather – hope that the fundraiser goes viral like the ALS “Ice Bucket Challenge” launched in August.
So far, Dance/Shake/Donate has raised more than $42,000, with more donations coming in. Many groups and individuals have taken on the challenge and posted videos of their activity online. The most recent viral video shows more than 1,000 local residents and out-of-town guests dancing and shaking together on Main Street in Ridgefield.
For more information on Dance/Shake/Donate, visit danceshakedonate.com.
CAP: Zoe Butchen and her dad, Jeff
Parkinson’s and Ashkenazi Jews
Discovered in 2004, leucine-rich repeat kinase 2 (LRRK2) is the greatest known genetic contributor to Parkinson’s disease.
By and large, Parkinson’s disease has not been considered to be a genetic disease. The majority of cases are called idiopathic, which simply means that we don’t know what caused the disease. In fact, only about 10 percent of Parkinson’s disease cases so far have been linked to a genetic cause. Mutations in the LRRK2 gene are the most common cause of Parkinson’s disease in this relatively small group, representing one to two percent of total Parkinson’s cases.
However, for people of two particular ethnic backgrounds – Ashkenazi Jewish and North African Arab Berbers – mutations in LRRK2 account for a much greater number of Parkinson’s disease cases than in the general population. While estimates vary, it is believed that changes in LRRK2 (predominantly the mutation scientists know as G2019S) account for 15 to 20 percent of Parkinson’s disease cases in Ashkenazi Jews and about 40 percent of cases in North African Arab Berbers. Other genetic changes in LRRK2 that increase the risk of Parkinson’s disease have been found in additional populations, such as in Asians of Chinese descent. It remains an active area of investigation to find all the genetic changes in LRRK2 that may lead to Parkinson’s disease.
Researchers say the study of LRRK2, we can speed progress toward treatments that would benefit everyone with the disease, not just those with genetic mutations.
For more information, visit michaeljfox.org.