The ALS Association

ALS Ice Bucket Challenge Progress

Family Ties Inspire Woman to Educate Others about Lou Gehrig’s Disease and Work with Upstate New York Chapter

Imagine growing up and watching an aunt and grandmother lose the ability to move or swallow and eat.  Imagine also discovering that some of your forbearers from the early 17th Century carried a gene that causes a progressive neurodegenerative muscular disease.  Debra Quinn is now facing what some of her closest relatives and distant progenitors battled during their lives: A fight against ALS.


After doing some research on her family’s history, Quinn, 46, learned that more than 20 of her father William McQueen’s ancestors had ALS.  She has taken a stand against this disease and works closely with The ALS Association’s Upstate New York Chapter in alerting others about ALS.  For her role in raising public awareness about the disease, the chapter recognizes Quinn along with her husband and primary caregiver Mike for exemplifying the spirit of “ALS Across America” during May, which is ALS Awareness Month.

“I will not settle to be ‘quiet’ about this disease as it needs to be talked about,” says Quinn, a manager at Short’s Convenience Store and mother to two grown children Dustin and Kristen, who also serve as Quinn’s caregivers.  Quinn was diagnosed with ALS in February 2009.

Like her father and the other paternal kin who lived with Lou Gehrig’s Disease, Quinn has what is termed familial ALS, which affects 5 – 10% of those with the disease.  Some, yet not all, people with inherited ALS have a gene termed SOD1 genetic mutation, A4V.
Having seen her father along with other relatives including a great aunt, an aunt and grandmother die from ALS has emboldened Quinn to speak out about the effects that this disease has on people.

Perhaps the greatest impression ALS has had on Quinn’s life is the loss of her younger sister Rhonda McQueen-Burrous who died from Lou Gehrig’s Disease in January 2007, only five months after receiving her diagnosis.  A 38-year-old wife and mother to two young children, Rhonda received primary caregiving from hers and Quinn’s mother, Margaret McQueen-Easton.  McQueen-Burrous’ situation was made worse because the family was unable to afford a wheelchair van or to make their home handicap accessible. 

“She suffered deeply and without the proper help and equipment,” Quinn says of her sibling.

To help ensure that others do not have the same experiences with ALS that her sister had, Quinn has worked closely with the chapter to generate awareness of Lou Gehrig’s Disease.  She participated in the Walk to Defeat ALS® in Rochester, New York in 2010.  The Walk, which is the chapter’s biggest annual event, raises funds to sustain patient care and support cutting-edge research to find treatments and a cure for the disease.  Quinn’s team raised almost $12,000 for this event.

“Deb is very active in her local community and region speaking publicly about ALS and its devastation on individuals and families physically, emotionally and financially,” says the chapter’s patient services coordinator Carrie Scholz, LMSW.  “She is actively working with local, state and federal legislators to understand the financial impact of this disease and to try to influence policy to help patients and caregivers access services.”

Steve Gibson, The ALS Association’s vice president of Government Relations and Public Affairs agreed with this assessment.  “Deb is a tremendous advocate who has tirelessly reached out to her Members of Congress about this disease, urging them to step up the fight against ALS.”

Quinn and two close friends travel to Rochester each month to attend the chapter’s support group meetings to interact with others facing the myriad challenges of the disease.  Involvement in these meetings has prompted Quinn to educate others in her area about ALS.

“It is hard and it is not pleasant, but I am the voice for my children, nieces, nephews and cousins— all 11 of them— who have a 50/50 chance of having familial ALS,” Quinn says of her efforts to inform the general public and political leaders of the disease.  “For them, for everyone, we need to seek change and look for a treatment or cure.”

Quinn will attend The ALS Association’s National ALS Advocacy Day and Public Policy Conference in the nation’s capital from May 8-10 and also will participate in a breakout session held during the conference focused on familial ALS.

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