Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that affects 20,000 people in the Unites States a year.
Two Hillsborough women, Deb Fabricatore and Donna York, organize a fundraising event called the “John Bocskocsky Memorial Benefit,” that helps support families dealing with the financial toll of the disease. The proceeds from the fundraiser got to HARK-ALS a charity that is run by York. The charity will use the proceeds to help provide financial and compassionate resources to ALS people and their families.
The fundraiser is in its second year and will be held on March 24 from 2-5 p.m. The dinner will take place at the Falcons Nest on Falcon Road in Hillsborough.
Fabricatore is the host to the event named after her brother who lost his battle with ALS. Donna York is the Executive Director of HARK-ALS, who lost her father to the disease.
“This disease does not discriminate and only 10 percent is genetic or familial,” York said. The rest of the time it is sporadic so they have no idea as to why one person has it and another doesn’t. Veterans are 50 percent more likely to be diagnosed than non-veterans, which very few people know. Most of the people who attended in 2018 said they had no idea how destructive the disease is.”
York created the charity after losing her father to ALS, and named it “Hark,” which was his nickname.
“For both Deb and I having lost people to ALS, I lost my father and she lost her brother,” York said. “It is such a misunderstood disease and there is such little awareness of it and how devastating it is for families. People really have no clue about ALS and how devastating it is for people physically, emotionally and financially.”
York said it costs up to $200,000 a year to take care of an ALS patient and a lot of that is not covered by insurance.
“There are two major things not covered by insurance for ALS. One is home health aides, so it is usually a husband taking care of a wife or vice versa, also kids have to pitch in. It is a 24/7 job and a patient can never be left alone,” she said. “All night long they have to be turned and suctioned through their trac. It is $24 an hour to hire someone to help you. The second is a handicapped accessible van which unless they have that they are essentially prisoners in their own home.”
The fundraising event raised $10,000 in 2018. Both Fabricatore and York are looking to raise more than $15,000 in 2019. They said close to 100 people attended the event in 2018.
“Donations for the silent auction raise a significant amount of the funds raised,” Fabricatore said.
She said that event helps bring an awareness to a disease that robs the person affected of everything.
“My brother lost his ability to move everything. He was completely paralyzed. He could not speak and eat. It is just an awful disease,” Fabricatore said. “Some people think this is an older person disease but it is not. This disease also does not discriminate.”
She said ALS is also called the bankruptcy disease because of the cost after insurance for families is more than $100,000.
The funds raised at the event will go to HARK-ALS York’s charity. The charity helps families financially by helping provide specialized vans for people with ALS through their program called “Hope Mobile.”
“This program helps families raise funds for vans and we gift it to them and when and if they don’t need it they give it back to us and we pass it on to another family,” York said.
The program began in 2016. The vans cost between $30,000-$50,000. HARK-ALS in three years has been able to gift 14 vans to families.
“Luckily everyone that has gotten one is still using them,” she said. “Vans are one of the biggest expenses for families, the next expensive item is home health aides and home modifications.”
Fabricatore said it is her dream to have this fundraising event grow each year.
To RSVP you must pay an admission of $45.
For more information about the John Bocskocsky Memorial event, contact Deb Fabricatore at [email protected] or 908-420-4751.