Kenneth McGunagle, former president of the Rhode Island Chapter of the ALS Association, has been named chair of the ALS Association’s National Board of Representatives.
The chapter’s executive director, Nancy Feroldi, said in a release that McGunagle was instrumental in growing the Rhode Island chapter and has remained active in the chapter since stepping down as president in 1988.
PBN: What first interested you in working with the ALS Association and why have you stayed dedicated to the cause through the years?
McGUNAGLE: My dad was diagnosed with Lou Gehrig’s disease, or ALS, in June 1991 and died later that same year at the age of 56. With no cure or treatment, the only support my family received was from the Rhode Island chapter of the ALS Association. I will never forget that, nor am I likely to feel that I have given back in an amount equal to what I received. I have remained active for more than 20 years frankly because the need is great. ALS has huge physical and emotional ramifications. It creates substantial need for practical, medical, and emotional support for patients, their families, caregivers, and the community at large.
PBN: Do you feel that nonprofit leaders with personal ties to their causes are more effective in their efforts?
McGUNAGLE: Well, I think that nonprofit leaders with personal ties to their causes are effective. But for more nonprofits to be successful, they must go beyond the direct reach of the cause and get the message to others who can help lead the effort, but have not been touched personally by the cause, yet.
PBN: Do you truly believe there one day will be a cure?
McGUNAGLE: Yes. The mission of the ALS Association is to “create a world without ALS” and that will take successes in research. In the mean time, patient care is the other component of the association’s work. I believe the Rhode Island chapter’s single greatest contribution has been the establishment of the Louise Wilcox ALS Multidisciplinary Care Clinic, in Providence, on the Rhode Island Hospital campus. The clinic provides resources and clinical expertise that make it easier for patients to cope effectively with ALS and live the highest quality of daily life, all at one site, at one time.
PBN: What is the Rhode Island chapter most in need of right now – funds or volunteers?
McGUNAGLE: Not surprisingly, both. Often families find their ALS journey so devastating an experience that they are not only exhausted but wanting to put their painful memories in the past. This makes it difficult to recruit and sustain volunteers from among those that the chapter has provided services to, unlike other causes where the survivors and their families typically lead the effort.
Research will find the cure. Research and care services are expensive, so fundraising has to be a part of the role of the ALS Association.
PBN: Congratulations on being named as chair of the National Board of Representatives. What made you want to take on this additional role?
McGUNAGLE: I see it as a great opportunity to help patients and their families. I have lived their struggle firsthand and want to do what I can to add a voice to help them. The National Board of Representatives is the forum to gather the perspectives and concerns of the various chapters and to allow for chapter input in setting the direction and priorities of the national organization. In my new role, I look forward to helping strengthen the chapter network of the ALS Association, so they can provide the best and most compassionate care and assistance to those people afflicted with this cruel disease.
