The New England Support Group is Where It All Started For Me

December 11, 2024

Guest Author: Donna Gorzela, Boston Ataxia Support Group Co-Leader

Over time, actual support groups change and evolve but the many memories and friendships we’ve made persist. Isn’t that what support groups are all about? We all have so much in common. We all know that we can lean on each other.

In the 1990’s, two men, Michael and Ben, started the New England Group. They created the relationship with MGH. They created the relationship with Dr. Schmahmann. We met at MGH. Michael brought a personal aspect to the group. We weren’t just members, we were all friends. The group got so big (typically more than 30 people at a meeting) that in 2006, our group hosted the National conference in Quincy, MA. My husband, Rich, and I organized the volunteers for that event. We recruited mostly family and friends, who remember it well.

I was diagnosed in 1998 and found it so comforting to be part of this Boston-based group. I have made so many friends over these past years. There are several people that I met back at that time that I’m still in touch with now. But sadly, some of the people from back then have passed away. I have so many memories that go back to these early MGH days. Our meetings were potluck and one woman in particular, always brought the same desert. My kids looked forward to her “cracker candy” at these meetings. When they later went away to school, I always made them “cracker candy” to take back to their dorms.

The New England Group at a Christmas party in Saugus, MA, in 2006

Back in 2006, Ben’s health was declining (he died shortly after the AAC) and Michael wanted to get more involved with FARA, so Rich and I took over the group. We continued it for several years and I, hopefully, continued this atmosphere of friendship. But after 2013, things started changing. Support groups started developing in other areas around New England and people started attending meetings closer to them. We were asked to change our name to something other than the New England Group. MGH also started changing its parking expense policy and the Boston-based group started fading away. Actually the last scheduled meeting of the New England Group at MGH was supposed to be in October 2013 but had to be cancelled because of the Red Sox victory parade.

Working with Lanie (Ben’s daughter), I tried to keep the Boston-based group going. But there were just too many other groups around and people found it too difficult to drive into the city. We tried meeting at The Lahey Clinic in Burlington, MA, but that attendance also dwindled. I did however, continue the monthly “coffee club” meetings at the North Shore Mall in Peabody, MA, but even those dwindled down to only about three regulars.

Some of us wanted to revitalize activity here in the state of Massachusetts but back in 2016 we were told there was no need in Massachusetts and Doug and I were sent to lead the New Hampshire group in Manchester, NH. However, we eventually got inklings that there were people unsuccessfully trying to find support in Massachusetts. So Doug and I wanted to re-start something here in our state. Then in 2020, we revitalized the group, calling it the Boston Group. Since it was the beginning of the pandemic, we met virtually. Meeting virtually has been a huge hit. We currently meet twice a month. Our emails reach out to over 90 people. People join our meetings from not only all over the state of Massachusetts but also from elsewhere! Even people I knew from the early “New England Group” days have joined these meetings. It’s like family reconnecting. We’re still there for each other.