The daily lives of area residents with Amyotrophic Lateral Sclerosis (ALS) are improved through the work of a local organization that was founded in 2005.
The Joan Dancy and PALS (People with ALS) Foundation provides assistance, services and programs that support ALS patients and their families, according to the organization’s website.
“The focus is on the quality of life for those fighting the battle today. The most valuable thing we provide is the accumulated knowledge the three staff members offer,” said Sean Magovern, the president and executive director of the Joan Dancy and PALS Foundation.
Two nurses and one social worker “guide families and lead them down the path,” Magovern said.
Magovern’s late father, Terry, founded the organization when his then-fiancé, Joan Dancy, a mother of two children from Middletown, was diagnosed with the disease. Dancy found few resources available to help her navigate the disease and before she died she asked Terry Magovern to start an organization to help ALS patients and their families in Monmouth and Ocean counties.
The organization has since expanded its delivery of services to Mercer and Essex counties.
Before he died in 2007, Terry Magovern founded the Joan Dancy and PALS Foundation. His son is carrying on the mission to assist people with ALS through services that include loans of equipment, communication and speech generating devices and assistance with in-home care and social services.
“There was a lack of services to assist people with ALS in navigating the path ALS puts you on,” Sean Magovern said.
The Joan Dancy and PALS Foundation does not focus on research and a cure, leaving that to national organizations, he said.
“We bring compassion and care. We hold hands and explain,” Magovern said.
Two important components of the organization, he said, are that it remains grassroots and that the “fun” stays in fundraising.
That “fun” will be on tap at the second annual Sinderella’s Ball to be held at 7 p.m. Dec. 5 at the Wonder Bar, 1213 Ocean Ave., Asbury Park. All proceeds from the $20 cover charge will benefit the Joan Dancy and PALS Foundation. Musical guests will be Pat Guadagno, Steve Reilly, Strumberry Pie, Sam Sims and Brian Bisbee.
Last year, 500 people attended Sinderella’s Ball and $90,000 was raised, said Leslie Berlin, a co-chair of the event.
“It seems that everywhere we go, people seem to know someone who has been diagnosed with ALS and they are so happy to be able to help an organization that does so much to improve the lives of those with ALS,” Berlin said.
In addition to Sinderella’s Ball at the Wonder Bar, two other annual events provide funds for the Joan Dancy and PALS Foundation: an early winter plunge into the Atlantic Ocean and the Saker family ShopRite “Strike Out ALS” campaign.
The foundation serves about 75 families annually and holds monthly meetings for patients and families on the first Tuesday of each month from 6:30-8 p.m. and for families and caregivers on the third Tuesday of each month from 6:30-8 p.m. The meetings take place at Riverview Medical Center, 1 Riverview Plaza, Red Bank.
ALS, which is commonly known as Lou Gehrig’s disease, affects nerve cells in the spinal cord and brain. This causes motor neurons to degenerate and eventually die, leading to muscle paralysis, according to the foundation’s website. There is no known cause or cure for ALS and an individual’s life expectancy is between two and five years.
For more information about Joan Dancy and PALS, visit joandancyandpals.org. For more information about Sinderella’s Ball, visit sinderellasball.org