‘Our work is far from done’

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Founder of HARK-ALS campaigns to raise $13K to assist ALS families through the U.S.

ALS, amyotrophic lateral sclerosis, a progressive neurodegenerative disease, is devastating and takes a toll on patients and their loved ones.

This prompted Donna Dourney York to establish HARK-ALS, a nonprofit based in Hillsborough. For York’s 65th birthday, she is conducting a fundraiser with a goal of $13,000 through the end of July to assist ALS families throughout the United States.

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When York’s father, Charlie “HARK” Dourney was diagnosed with ALS in 2007, she had difficulty finding information on the disease and places to get assistance.

After the death of her father in 2009, York and her six siblings decided that they had to do something to assist families facing ALS. That was the birth of HARK-ALS.

The goal of HARK is simple: Change the way the world views ALS. The organization’s mission is to be completely transparent about the crippling physical and emotional aftermath of an ALS diagnosis and help raise financial support for families caring for their loved ones.

HARK provides assistance to alleviate the financial burdens faced by families battling ALS. Support includes:

  • Purchased and donated a handicap accessible van to a pALS.
  • Purchasing equipment not covered by insurance.
  • Paying travel expenses for pALS to visit family or attend an important family event they would not otherwise be able to afford.
  • Visit communities across the country sharing Hope on the Horizon increasing awareness of ALS and benefitting a local ALS family.
  • Provide financial assistance for household expenses.
  • Assisting families with children during the holidays.
  • Provide assistance with home modifications.

Every 90 minutes someone dies from ALS or is diagnosed with this progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, according to statistics about ALS.

ALS patients slowly lose the ability to use any voluntary muscles; they lose their ability to speak, swallow, talk, walk and breathe without help. While the body becomes disabled, the mind still stays intact. ALS is not a rare disease. It doesn’t discriminate, it hits all genders, age groups, race, and socioeconomic backgrounds.

Since HARK’s inception in 2010, they have raised $4 million for ALS families, secured 18 Hopemobiles (wheel-chair accessible vans), organized 20 wheelchair accessible home renovation projects, and provided 600 families funding for patient care services, and assistance to 10 plus sister ALS organizations.

In 2022 alone, HARK raised $500,000 in fundraising events, with 100% of the proceeds going to ALS families.

“Our work is far from done,” York said. “ALS is called the bankruptcy disease as it cost a family between $200,000 and $300,000 a year to care for an ALS patient, and much of the home care is not covered by insurance. Often young children of the household also become caretakers.”

To donate, go to: www.facebook.com/donate/208905665377463/?fundraiser_source=external_url.

To view the short documentary Hope on the Horizon, An Expedition for ALS, go to https://youtu.be/zgXqKfWe7fg.

For more information on HARK-ALS visit www.hark-als.org.

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