Hark-ALS:  A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS

In 2009 I watched my dad slowly lose his ability to walk, talk, swallow and breathe before taking his last breath 18 months after being diagnosed with ALS (Lou Gehrig’s Disease). I’m one of 7 children and my dad was a veteran so we had all we needed to take care of him at home. Not long after my dad passed a good friend’s husband was diagnosed with ALS; by the time he passed away she was financially devastated. My first thought was, “How do people do this alone?” Taking care of an ALS patient is a 24/7 job. “Where do people turn that can’t afford home care or have to quit their jobs to take care of their loved ones?” When I looked, there were very few resources available for financial assistance and many only helped a specific geographical area. I decided what better way to honor my dad than by helping other families dealing with this horrible disease, especially those that had no family to support them. We would be their family.

Hark-ALS was formed in memory of my dad, Charlie “Hark” Dourney. To date we have raised $3 million to provide financial assistance to ALS patients and their families. ALS is often referred to as the “bankruptcy disease” as the cost of caring for an ALS patient at home can exceed $200,000 a year. Our goal is to ease the financial burden for the patient and his or her support system. We provide a myriad of resources including purchasing Hopemobiles© wheelchair accessible vans, securing medical equipment for patients not covered by insurance, providing financial assistance for household expenses and home modifications for wheelchair accessibility, paying travel expenses for ALS patients to visit family, helping families with children during the holidays and much more. We are one of the few organizations that does this across the country. For more information and to view our documentary, Hope on the Horizon, please visit www.hark-als.org.