Hillsborough Resident Saw a Need in the ALS Community and Jumped into Action Inbox

 ALS and its devastating toll on patients and their loved ones prompted Donna Dourney York to establish HARK-ALS, a 501c (3) established in Hillsborough, NJ. When Donna’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 Charlie Dourney in 2009, York and her 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, 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.

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. 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, races, and socioeconomic backgrounds.

Since HARK’s inception in 2010, they have raised $4M 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+ 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. 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,” said York.

For her 65th birthday York conducted a fundraiser with a goal of $13,000 through the end of July to assist ALS families throughout the United States. 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.

More information on HARK-ALS can be found here: www.hark-als.org.

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