February 2016 Volunteer of the Month
Mary Gabrielli knew about ALS long before her husband Frank had trouble walking. It was the early 1980’s and Mary’s best friend lost her husband to the disease. When she saw the quick progression and how the struggles weighed heavily on her friend, Mary, who was in her 30’s at the time, said “I never want to see this disease again.”
For the next few decades, it seemed that Mary would in fact not see the disease again. She spent those years growing ever happier with Frank, their children, and their grandchildren. Life was good.
Then, in 2011, the disease would thrust itself back into Mary’s life. Frank was struggling with a drop foot issue and other symptoms that felt odd. He was a gregarious, fun loving grandfather who was always busy, so the changes he was experiencing felt odd to them both. But when the neurologist finally gave the diagnosis of ALS, it wasn’t odd to Mary, it was just devastating.
Frank wouldn’t allow his wife to remain devastated. He had a positive attitude in life and, while he understood the ramifications of the diagnosis, he was going to do anything in his power to change the odds and make a difference. That year, the family started a team in the Ocean City Board…Walk to Defeat ALS® called the Gabrielli Girls in honor of Frank having four daughters, all of whom rallied to his side.
While the walk was a positive experience for all of the Gabrielli girls (and the guys), Mary and Frank wanted to do more. They signed up to participate in the national ALS Advocacy Days in Washington, DC in May, 2012. The entire experience was moving for them as they saw many people with ALS in their days in the nation’s capital.
“We were overwhelmed to learn how much of a difference we could make helping all of those living with this disease,” said Mary. “It was amazing for us to see so many people with ALS, their caregivers, and family members, as well as our friends with the Chapter, come together and sit down with politicians, tell them our stories, and request that they continue supporting an end to this cruel disease. Each person that travels to Washington, DC is only one person, but together we were, and continue to be, a sea of strength.”
Mary was amazed that the politicians that she met, including her Senator from New Jersey, took time to listen. What she didn’t realize was that the politicians themselves were as moved by her story as she was by the experience. They listened to Frank talk about his experience as a military veteran and were astounded to learn that military veterans are diagnosed with ALS at twice the rate of the general population. Frank’s story clearly made a difference that year and it helped that he and Mary brought over one hundred signed letters from friends and family also asking for support.
“It’s been nearly four years, but I still remember meeting Frank and Mary at that Advocacy Day in 2012,” said Tony Heyl, Director of Public Policy at the Greater Philadelphia Chapter. “I had only heard of the Gabriellis before then, and all of a sudden, while I gathered with our Chapter delegation, Frank zoomed up to us in his scooter. He had so much energy and enthusiasm to help others that it made me want to try to match him, but that was no easy task.”
That experience didn’t move Mary to tears, it moved Mary past tears. “I was tired of crying. I wanted to do something positive instead.”
Mary and Frank continued to find positive outlets in the months that followed. They participated in the Chapter’s local resource group close to their New Jersey home and befriended many other patient families. When they walked into the group, they first saw people with ALS, but when they left, those people were friends, friends like Dave, Milt, and Mike whose stories and personalities gave Mary even more motivation to fight.
Also in 2012, Frank met Mikaelyn Austin of PHL 17 to do a story promoting the upcoming Phillies Phestival. Mikaelyn came to the Gabrielli home and learned and laughed, enjoying a family that would, as happens with everyone that meets them, quickly become friends. Their story motivated the reporter to begin work on a bigger ALS documentary and Mikaelyn and her film partner have gone on to do many video projects for The ALS Association.
When Frank passed away from ALS in July of 2013, it was not an ending. The love for a husband, father, and grandfather continued, as did the impact of Frank’s advocacy over those two short and eventful years with the disease. Mary knew that her husband would want her to continue his work, to continue their work. More than that, Mary wanted to continue fighting for Frank, for Dave, for Milt, and for every ALS family that she had met over those years, including her friend who had faced the disease three decades earlier.
The Gabrielli Girls continued to Walk to Defeat ALS®, but Mary had trouble walking. She could have just gone to sit at a team table to support her family, which would have been great, but instead she asked how she could volunteer. Since 2013, Mary has used the walk in Ocean City and in Philadelphia as a chance to work at the registration table. She sees it as an opportunity to help the Chapter and to connect with other ALS families and let them know that they are never alone.
Mary also wanted to continue the advocacy on Capitol Hill. She wasn’t alone in the family. In the years that followed, Mary visited Washington, DC to talk to lawmakers and brought her daughters with her. The full force of the Gabrielli Girls was on hand as they met with members of Congress, shared their story, and made the case for funding ALS research. Mary is already planning on attending the next Advocacy Day to share Frank’s story again.
The advocacy efforts and the walk would make Mary worthy of recognition alone, but she wanted to do more. At one walk after Frank’s death, Mary saw Chapter President Ellyn Phillips and said “I want to do something else to volunteer.”
Ellyn, as is often the case, knew exactly what to do. In just a few days, Ellyn had connected Mary with Gail Houseman, a nurse with the Chapter, to learn about being a Visiting Volunteer. Right way, Mary loved the new role as she shared her experiences with someone else and provided comfort and companionship to someone with ALS. Disabilities keep Mary from being able to work, so her daughter Brenda drops her off so that she can be a Visiting Volunteer for a time and focus on helping. Brenda has herself become a professional home care aide with BAYADA Home Health Care as a result of seeing her dad’s battle with ALS. It’s clear that Frank’s fight continues through the love and compassion of his whole family.
In fact, the person that Mary is helping now had reached out to the family after reading an article about Frank years earlier.
In the brief time that Frank led the battle, his rallying cry was that he knew that as a veteran, he would get excellent care. He wanted all people with ALS to get the same level of care and, hopefully, a cure. Mary is continuing with the same passion to honor Frank and to be there for all people with ALS and their families.
“I live for my grandchildren and to help people with ALS,” Mary said. For a disease that brought Mary too much sadness, she’s doing a lot to bring others as much joy as possible.