A group of neighbors and friends from Marlboro have joined forces to honor an ailing friend and to help others like her who are living with amyotrophic lateral sclerosis (ALS).
Using music to propel their mission, they have organized a fundraising event called Sinderella’s Ball to be held at the Wonder Bar, 1213 Ocean Ave., Asbury Park, on March 1.
Sinderella’s Ball will feature DJ Lee Mrowicki and four New Jersey-based bands: Alex Brumel, Brian Bisbee, Charles Laurita and the Mischief, and Matt Wade. Funds raised will benefit the Joan Dancy and PALS Foundation and honor Sindy Weiner of Marlboro.
Weiner, 58, was diagnosed with ALS three years ago, according to her husband, Lou.
ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, causing muscles to waste away and eventually stop functioning while the individual’s mind remains clear.
There is no known cure for ALS, a diagnosis that approximately 5,600 people in the United States receive each year. However, with advances in research and medical care, many ALS patients are living longer, more productive lives.
It is estimated that as many as 30,000 Americans have ALS at any given time. Early symptoms can present as weakness in the arms and legs, and/or problems with speech, swallowing or breathing.
Although ALS can happen to anyone, it most commonly occurs in men and women between the ages of 35 and 70.
At the age of 50, Joan Dancy, a mother of two from Middletown, was told she had ALS.
Dancy and her fiancé, Terry Magovern, who was Bruce Springsteen’s longtime assistant, discovered there were very few resources available locally to help people who had been diagnosed with ALS.
It was Dancy’s wish to establish a grassroots organization to provide direct help to ALS patients and their families in Monmouth and Ocean counties. Magovern founded the all-volunteer Joan Dancy and PALS (People with ALS) Foundation in 2005 in memory of Dancy.
Upon Magovern’s death in 2007, others carried Magovern and Dancy’s legacy and commitment to improving the quality of life of ALS patients and those who care for them by providing assistance, services, programs, equipment loans, in-home care, social services and more. The foundation also encourages, but does not fund, scientific research for the prevention, alleviation, care, treatment and cure of ALS patients.
The Weiners have lived in Marlboro for 26 years. Last year, they purchased a onelevel summer/transition home in Monmouth Beach to make it easier for Sindy to get around.
“She is getting weaker,” Lou said of Sindy. “She has no use of her left arm or hand. It’s tough on the family, it’s tough on her, it’s tough on everybody around. We have someone who helps us during the week.”
Two of the couple’s three daughters are away at college and their oldest daughter lives in Marlboro.
The Weiners discovered Joan Dancy and PALS on the Internet about two years ago.
“Joan Dancy and PALS has been terrific as far as support groups and on an individual level,” Lou said. “[Support group facilitators] Kathy Valentino, Pat Schaeffer and Kate Sperring are great as far as giving people the emotional resources, physical resources and in some cases financial resources.
“If you need equipment like a walker, a wheelchair or other types of equipment that you cannot afford to buy but need for a short period of time, they will loan it to you. In some cases, they will pay a person’s electric bill if they are in trouble, but they cannot do it long term. They provide a tremendous amount of support to the person and their families and caregivers.”
Because Joan Dancy and PALS is focused locally, the money and resources directly help families in the area that need support. The organization offers advice on how to navigate the insurance system to get approval for equipment and doctors’ visits. Fundraisers such as the upcoming Sinderella’s Ball and the Valentine Plunge, held recently at Manasquan Beach, keep the organization afloat.
According to Lou, about 500 people plunged into the icy waters of the Atlantic Ocean on Feb. 8 and raised more than $250,000 for Joan Dancy and PALS during the Valentine Plunge.
According to Leslie Berlin, Sindy’s friend and one of the organizers of Sinderella’s Ball, the goal of the event is to raise $70,000.
“Joan Dancy and PALS is such a great organization and it helps so many people,” said Berlin. “It is so deserving of this help. The community has been great supporting this event. So many people know people who have ALS or have had it.”
Berlin has known several people who have had ALS, including Sindy. “Sindy is beautiful, both in and out,” said Berlin. “She has a tremendous sense of style and always has a smile on her face and she is so caring. She had already been diagnosed and she would come over to help me when I had foot surgery.”
“This is our inaugural Sinderella’s Ball,” Jay Kanofsky, an organizer of the event and close friend of the Weiners for 25 years, said. “We have raised $40,000 so far and we have sold a lot of tickets already. It should be a fun night and we will raise money for a good cause.” Kanofsky said he wanted to do something for a very good friend who has ALS. He knew that his friends lean on Joan Dancy and PALS for help and he wanted to do something to help the organization that relies on fundraising to help others.
“It is very uplifting to be able to do something,” said Kanofsky. “You sit on the sidelines and you are always told it is great to contribute and help others in need, and finally when you jump in with both feet it feels really good. I am indirectly helping a lot of people who rely on Joan Dancy and PALS.”
Tickets for Sinderella’s Ball are $20 and can be purchased at the door or online. Many sponsorship opportunities are available and donations of goods and services for a silent auction will be accepted through Feb. 26. The doors will open at 7 p.m. and the concert will begin at 8 p.m. Visit www.sinderellasball.org or call 732-492- 7381 for more information.
“Like any disease, nobody knows until you walk in somebody’s shoes,” Lou said. “This is unique. You don’t know how the course is going to run, you don’t know when. You can’t plan anything. Live for today, that’s all I can say, because you don’t know what tomorrow brings. Hug your kids, hug your spouse, because you have no idea what the next minute is going to be.”