ALS, Amyotrophic Lateral Sclerosis, commonly called Lou Gehrig’s disease, affects nerve cells in both the spinal cord and brain. This causes motor neurons to degenerate and eventually die, leading to muscle paralysis. Unfortunately, there is currently no known cause or cure for this disease. However, because of advances in research and medical care, many ALS patients are living longer, more productive lives.
Fortunately, there is a local organization, The Joan Dancy & pALS (people with ALS) Foundation, whose mission is to provide services and programs that support ALS patients and their families in local communities to help them have the best quality of life possible given their circumstances. The Foundation is a registered 501 (c)(3) charity with approved NJ Charity Registration. It was established in 2005 by Terry Magovern (1940-2007), who was the Personal Assistant to Bruce Springsteen. Terry lost his fiancé Joan Dancy to ALS. One of Terry’s (and Joan’s) frustrations was that there was no local organization that existed which would provide resources and direct assistance to those fighting ALS.
Sinderella’s Ball, a benefit concert to support the Foundation, was established in 2014 by a small team of friends three and a half years after the team’s hero, Sindy Weiner, was diagnosed with ALS. The team saw first-hand what the Foundation did for Sindy and wanted to create an event that would help provide the resources needed by other individuals and families faced with the everyday challenges that accompany ALS. Despite her ALS diagnosis, Sindy wore many hats: mom to loving children Pam, Aimee, and Meri; devoted wife to Louis for over 35 years; Grammy to Dylan & Logan; author of The Misadventures of Magenta Purple; nurse to many; and a friend to all. During her courageous seven-year battle with ALS, Sindy’s anthem was “Fight Song” by American singer-songwriter, Rachel Platten. While Sindy lost her battle to ALS in 2017, the team continues their own fight song in her memory, and continues to raise money to help individuals and families facing the multitude of challenges imposed by ALS.
The 10th Annual Sinderella’s Ball, to benefit the Joan Dancy & pALS Foundation, will be held on Saturday, December 2nd at the iconic Stone Pony in Asbury Park, New Jersey. Doors will open at 7:00 PM.
Since its inception, Sinderella’s Ball has raised over $800,000 for the Joan Dancy & pALS Foundation. Celebrating its 10th Anniversary, the team’s goal this year is to reach the $1,000,000 mark in total funds raised. All money raised through Sinderella’s Ball goes directly to the Foundation which prides itself on the fact that 96¢ of every $1.00 received is used for patient services.
For many people with ALS, there is no clear identifying cause of the disease. Medical professionals have studied numerous potential causes, such as diet, lifestyle, and environment, among others. However, at present, no clearly defined origin has been identified.
ALS patients, sadly, lose the ability to walk, eat, speak, and eventually breathe. Upon diagnosis, patients are given just two to five years to live. ALS can strike anyone at any time and although there is no known cure, recent scientific breakthroughs provide hope for the future.
For some ALS patients, the cause is genetic. For about 5 to 10 percent of people with ALS, there is a clear genetic link to another family member with ALS. This is often referred to as familial ALS. In such instances, genetic testing can be done in consultation with dedicated medical teams.
The challenge of ALS is best expressed in simple numbers. The numbers clearly indicate that ongoing support makes a difference at a time when patients needed it the most. The Foundation currently provides:
· 15 to 20 … The number of pieces of DME (Durable Medical Equipment) the Foundation delivers each month to pALS to assist them. These include hospital beds, commodes, walkers, shower chairs, ramps and any other devices pALS need during such challenging times. If the Foundation doesn’t have the equipment in storage they will purchase and deliver it!
· $300 … The money the Foundation provides per month for rental costs for handicapped accessible vans needed for access to and from doctor appointments.
· 500+ … The number of patients and their families the Foundation has helped since its inception.
· $25,000 – $30,000 … The amount of money the Foundation issues in grants each month. This money is used for home health aides and medications not covered by insurance. For example, $1,000 can provide 25 hours of care which equates to three, eight-hour shifts.
· 100% … The percent approved of all funding requests made to the Foundation.
Sinderella’s Ball will feature an evening of rock’n’roll music provided by The Strumberry Pie Trio with the musical headliner the Moroccan Sheepherders. There will be a variety of raffles, as well as silent and live auctions for some exciting events and memorabilia.
Celebrate the 10th Anniversary of Sinderella’s Ball at the Stone Pony on December 2nd and be a part of the team’s mission of providing A Million Ways to Give Help to those living with ALS.
To learn more about the cause, purchasing tickets, offering help, and donating, please visit www.sinderellasball.org.