Hillsborough Nonprofit Leader Is Dedicated To Fighting ALS

When Donna York’s father, Charlie “Hark” Dourney, lost his battle with amyotrophic lateral sclerosis (ALS) in 2009, she realized the full extent of the devastating impact this disease can have, not only on the person affected but their family as well. While York had a strong family support system during her father’s journey, she knew not everyone whose life is touched by ALS is so fortunate.

Two years later, she founded Hark-ALS, a nonprofit organization that raises awareness and funding to support families across the country who are dealing with an ALS diagnosis. Since then, she’s received numerous accolades for her work, including the Somerset County Woman of the Year “Hometown Hero” award, the Russ Berrie Foundation “Making a Difference - Unsung Hero” award, a NJ State Senate Citation from Andrew Zwicker, and even a Proclamation from the Mayor of Hillsborough.

When she’s not dedicating herself to the fight against ALS, York, who holds a Master's degree in Management and a certification in Non-Profit Management, serves as the Executive Director of Girls on the Run of Central New Jersey, the local chapter of an international girls’ empowerment program.

We spoke with York about her passion for ALS awareness, her work within the local community and what she loves about living in Hillsborough.

Answers have been edited for clarity and length.

Patch: You founded Hark-ALS in memory of your father. Can you share a bit more about your personal experience with ALS and why you started your organization?

York: Hark-ALS serves ALS families across the country. I got involved in the ALS community after watching my dad suffer through the debilitating effects of the disease. No one knew anything about ALS at that time (it was well before the Ice Bucket Challenge).

I also had a good friend whose husband showed signs of ALS about a year after my dad passed. They didn't have insurance so he wouldn't go to the doctors, but he was eventually diagnosed with it. My friend had to quit her job to stay home and take care of him; they didn't have the money to pay caregivers and it is not covered by any insurance.

When he passed away about a year later, she was financially devastated. I didn't know of anywhere families could go to get help financially for the overwhelming costs associated with ALS. I started Hark to see if I could help. To date, we've raised $4 million, which has all gone to help ALS patients and their families.

Patch: You’ve been recognized locally and statewide with awards for your work with Hark-ALS. Have any of these recognitions been particularly meaningful to you?

York: I was honored that the Mayor and Town Council chose to recognize my work with Hark-ALS by presenting me with a Proclamation. Any time I have the opportunity to spread awareness of ALS and how devastating it is for families, I appreciate it.

Patch: Before you founded Hark-ALS, you started Girls on the Run of Central New Jersey. Tell us more about that program and your work in the local community.

York: I started the Girls on the Run program in 2001 in Somerset County with 40 girls and now serve five counties with 2,500 girls participating annually. We host a 5K race twice a year in Somerville and I serve as race director.

The race is the culmination of the Girls on the Run program and what the girls train for during the 10 weeks our coaches spend with them. Running is the vehicle we use to teach the girls goal-setting. When they cross the finish line in the 5K, they understand that anything can be accomplished if you set a goal and work towards it — they can be anything they want to be. There is nothing more inspiring than seeing the girls cross the finish line, with a family member, and the sense of accomplishment and pride on their faces!

Patch: How long have you lived in Hillsborough and what do you love most about the community here?

York: I moved to Hillsborough from Basking Ridge 15 years ago. We bought my husband's parent's house where he grew up. My husband attended Hillsborough High School. We have great neighbors and both enjoy living here.

Patch: Finally, what do you wish others knew about ALS and its impact?

York: I honestly wish people who have never had a personal experience with ALS understood how devastating it is emotionally, physically and financially for the entire family. It is a very misunderstood disease and one that people believe is so rare they will never be affected by it. Those that are affected need help and they need it from people outside of the ALS community because those in it don't always have the resources to help.

I have always told people when they reach out to me for financial assistance that the ALS community is not one you ever want to be a part of if you have the choice, but if you are, you will never find a more supportive group of people anywhere.

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