Founder and executive director of ALS Utica New York talks about the organization’s 20th year anniversary
By David Podos
Q: How long has ALS of Utica been in business and what is your position?
A: I founded the organization in 2003, so actually we are celebrating our 20th year anniversary in the month of March. I am the executive director.
Q: What is ALS? I believe there are some misconceptions about this disease.
A: ALS is a neuromuscular disease, and stands for amyotrophic lateral sclerosis.
Q: I think many people might be familiar with the term ALS in relation to Lou Gehrig’s disease, the famous New York Yankees baseball player who had to retire in 1939 because he was diagnosed with ALS, am I correct?
A: That is absolutely correct.
Q: So, how does someone get ALS and what are the symptoms?
A: At this point in time there is officially no known cause for why people get ALS, as well as no known cure. The disease is very debilitating. It wears away the nerves of the brain and spinal cord as the disease progresses. Eventually it prevents a person’s ability to walk and even speak.
Q: You mentioned you found ALS of Utica back in 2003. How did that come about?
A: My mother-in-law passed away from ALS in 1999.
Q: I am sure that must have been a very difficult time for you and your husband and rest of the family. Did the disease come upon her all at once?
A: It was difficult for sure. She was only 58 years old when she died. From her first symptom to her death, it was only 11 months. From her diagnosis to her passing it was only four months. She basically had her first symptom the beginning of the year in January. She got diagnosed in July and passed in November.
Q: While you mentioned earlier that there is no known cause and or cure, I am wondering is there any possibility because your mother-in-law had this terrible disease would your husband for example be susceptible to getting ALS?
A: Five percent of cases are considered familial. Unfortunately, it is a disease that anyone can get.
Q: What are some of the services that your organization provides to people and their families who have ALS?
A: Well first of all, I need to say we are an independent organization. We are not an affiliated ALS chapter. By being independent we have more control on what services we can provide and how that is accomplished. We probably do more for our clientele than most ALS [chapters] do with the money that we give. So, our goal is to support someone who is going through this disease. We support them from an emotional standpoint as well as from a financial standpoint. Our financial giving is quite large. As soon as someone registers with us they instantly get access to our estate planning grant. The stipulation however is, you must live in either Oneida and or Herkimer county. The money the family receives is specifically for the purpose of living at home and getting home care. Our estate planning grant is for $5,000 and we have wish grants that the families can apply for and they are also $5,000. So right out of the gate they have access to $10,000.
Q: That’s absolutely incredible, which begs the question — where does your organization get this money from?
A: For years we were phenomenal at raising money. We don’t rely on any state and or federal monies. The money we have was raised right here in Oneida and Herkimer counties. During an 11-year time period through our fundraising efforts, we garnered more than $1 million. So right now, we have been living off of those funds in regards to helping out those in need. Unfortunately, we do not have a lot of fundraising coming in anymore.
Q: Why don’t you have fundraising anymore; your organization was so successful in the past?
A: We are an all-volunteer organization. I personally can no longer do the kind of fundraising we used to do. My time and dedication go toward helping the ALS families, running the ALS organization, that is what I can give and do right now. I have a family business to run, and especially with COVID-19 I had to turn my attention to my business to keep that running smoothly and efficiently. Fundraising is a time-consuming, very difficult activity and today, more so than ever. While our fundraising [activity] is not like it was in the past, I do have to say, we have a number of local businesses that continue to support ALS of Utica each year and we have a number of smaller fundraising events that we still do.
Q: How does someone contact you and or your organization?
A: Our website is ALSUtica.org phone 315-768-8502. That phone number is actually our business number (Advanced Tool) but whoever calls can ask for me.