Vivian Lee had her first personal experience with amyotrophic lateral sclerosis when her Herricks High School French and Spanish teacher Thomas Coleman contracted the disease and died in May 2013.
Then Vivian and her twin sister Jacqui learned last fall that the father of a close friend of theirs was diagnosed with the ailment, also known as Lou Gehrig’s disease.
The experience has motivated the twins, who will entering their senior years this fall, to organize a fundraiser to fight the disease at the Spring Rock Golf Center in New Hyde Park on Aug. 17.
“It was no longer a distant figure. It was someone that we knew,” Jacqui said. “It just seemed like it came closer to home.”
All proceeds from the event will go to the Greater New York chapter of the ALS Foundation, which they contacted when they started planning the event in May.
They said they approached the Spring Rock Golf Center at 377 Denton Ave. because their friend’s father was an avid golfer.
Vivian and Jacquie have reserved a few booths at the Spring Rock center’s driving range for the event, dubbed “Swing for ALS”.
“We’re just hoping to make it a nice community event. They agreed to help us do this,” Vivian said.
The two Herricks students also lined up food sponsors for the event, including Iavarone Brothers in the Lake Success Shopping Mall and the Polito Bakery and Dominick’s Italian American Delicatessen in New Hyde Park.
Tickets are $30 and provide each person attending the event with food and a bucket of 120 golf balls for the driving range. The event will also raise money through sales of $2 raffle tickets for a golf club and carry-on luggage the ALS Foundation donated for the event.
Vivian and Jacqui, who said they are hoping to draw 100 people for the fundraiser, have already collected $1,054 on a website they created for the event – www.swingforals.weebly.com.
The sisters are also planning to screen an hour-long documentary at the fundraiser that they produced as a school project last spring about people affected by the disease.
For the documentary, the twins interviewed a colleague of their mother whose mother died from ALS, Coleman’s sister, Brenda McKeon, and the friend whose father has Lou Gehrig’s disease.
They said the filming the video gave them insight into both those who are afflicted with the disease and those who are close to people afflicted by the disease.
“We wanted more background on how the disease affected families,” Jacqui said. “After hearing everyone’s stories, we realized that even though ALS is supposed to be a rare disease, it’s very prevalent in our community.”
They said shooting the documentary was, at times, an emotional experience.
“We tried to be as sensitive as we could about it. With the help of everyone, it was relatively easy to do, and it was a very good experience,” Vivian said.
They’re now editing a version of the video they plan to send to all those they interviewed for it.
With the help of Herricks High School assistant principal Bryan Hodge, the sisters sent an e-mail blast to Herricks High School students and parents about the fundraiser. They have also created a flyer they been distributing to publicize it.
The pastor of their church, Shelter Rock Church in Manhasset, also has publicized the event in the church’s newsletter.
Apart from raising funds, the event is intended to honor Thomas Coleman; Mary Ellen Lewis, the mother of their mother’s friend; their friend’s father, Glenn Petry and William Kupec Jr., the husband of a woman in their church who also died from ALS.
The Lee sisters are both active in their church, and said they regularly go on summer mission trips the church has sponsored to help people in impoverished areas of Washington, D.C., Peru and the Bahamas. Vivian said their faith is a source of motivation in their drive to raise money for the ALS Foundation.
“It’s definitely a large factor,” Vivian Lee said.
