Jacqueline Sembor, National Multiple Sclerosis Society
BOHEMIA, N.Y. – It’s been said that two are better than one. For two Bohemia residents who met in a support group for those battling multiple sclerosis, that seems to ring true. Inseparable friends, Lois Culmone and Gene Bellmund resolved to be there for one another through thick and thin. Today the pair is still standing by one another, two steps closer to a cure.
“It was luck that we found one another,” recalled Bellmund, who was diagnosed with MS in 2003. “We were quick to become friends because we are driven personalities and we both are able to maintain a positive attitude, living life as fully as possible, even in the face of MS.”
More than 2.3 million people, like Bellmund and Culmone, are affected by multiple sclerosis, a potentially debilitating disease. Symptoms of MS can include, among other things, numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility, and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS cannot be predicted.
Culmone and Bellmund became active members of the National MS Society, Long Island Chapter. They volunteered in the office, attended support groups and filled in where needed. Then in 2009, Bellmund decided they needed to step it up for the chapter.
“I started asking about Walk MS, and the staff invited me to stop by the 2009 walk at Jones Beach,” said Bellmund. “I remember it was pouring rain that morning, and I mean really pouring. The one thing that stuck out to me most was that everyone was smiling, despite being soaked to the bone. That was when I knew that Walk MS was where we needed to be.”
The next year, in 2010, Bellmund captained the HopeDreaMS Walk MS team. Initially worried about not being able to meet his $500 goal, he pressed on with hopes and dreams of helping to find a cure for MS.
“I knew that I would have been able to raise $500 on my own,” said Culmone, who experienced her first symptoms of MS following the birth of her second daughter, and was later diagnosed in 1974 after years of tests. “But Gene wasn’t so sure. He wanted to do things well the first time, and so he really put his heart into it.”
That year, Bellmund led the HopeDreaMS Walk MS team in raising $10,000. He was proud of what he had accomplished, but always striving to do more, Bellmund knew that two heads would be better than one.
True to form, Culmone was there to bolster the 2011 HopeDreaMS team. It was then that they discovered the potential shared leadership could really unleash.
“We decided to co-captain the team,” said Culmone. “I did a lot of the organizational work, such as typing up emails and making phone calls to ensure the team was ready to go on walk day. Gene, on the other hand, did a lot of networking and active recruiting.”
The captains’ hard work paid off, and the 2011 team raised $15,500. In 2012, the duo, now coined by many “Bellmund and Culmone,” led the team in raising more than $20,000.
“We were very excited because every year we were able to do a little better,” said Bellmund. “We secured team sponsors, we began hosting a fundraiser at O’Reilly’s Pub, and we had a solid group of about 15 people who were dedicated to fundraising. Everything was full-steam ahead.”
Then, following the 2012 Walk MS, Culmone received devastating news. In an ironic twist of fate, her second child, Michelle Povey, 40, also received a diagnosis of multiple sclerosis.
“Michelle’s diagnosis took me back 40 years to the day I received the same news,” reflected Culmone. “At the time, I had never heard of MS, yet I only had two questions: was this fatal, and, was it hereditary. I don’t even know what made me ask about MS being hereditary, but when the doctor responded, ‘no,’ to both, I was relieved.”
While doctors still cannot say what the root cause of MS is, recent data suggest that genetics as well as a person's environment may play a role. Some scientists theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent, which, upon exposure, triggers an autoimmune response. Sophisticated new techniques for identifying genes may help answer questions about the role of genetics in the development of MS.
“I was devastated, and I felt responsible,” said Culmone, who now uses a power chair to maneuver. “I know I didn’t give it to her. Multiple sclerosis isn’t contagious or hereditary. But I still feel like it’s partially my fault.”
Culmone’s determination to find a cure for MS doubled, and her daughter, Michelle, quickly became a top fundraiser for the team. HopeDreaMS continued to grow and in 2013 collected a total of $21,500. To date, Team HopeDreaMS has reached a total fundraising amount of $67,000 and captains Bellmund and Culmone, along with their team, are still dreaming big.
“Together, Michelle, Gene and I are fighting this battle,” shared Culmone, who is already planning this year’s fundraisers, events organized by the team for the community in order to bolster fundraising totals. “We mustn’t let this get us down. Instead we must keep moving forward.”
This year, HopeDreaMS will once again step out at Belmont Lake State Park for the 2014 Walk MS, presented by Zwanger-Pesiri Radiology, on Sunday, May 4. Check in opens at 8 a.m. and walkers will step out at 10 a.m.
Funds raised by the National Multiple Sclerosis Society, Long Island Chapter, through events, such as Walk MS ensure ongoing scientific research to find better treatments and a cure, and to provide vital programs and services offered by the chapter.
At this year’s event, the Belmont Lake State Park site will once again feature the Annual Pooch Parade, poised to begin at 10:30 a.m. to allow walkers without dogs to get a head start on the route. Participants can bring their furry four-legged friends as long as they are on a leash.
“It is truly amazing to look back and see what we have accomplished in just four years,” shared Bellmund. “I have a goal of becoming a $60,000 a year team by the year 2016. With a little help from our friends, I know we can do it.”
To learn more about the 2014 Walk MS, presented by Zwanger-Pesiri Radiology, to make a donation to team HopeDreaMS, or to register, please visit www.walkMSlongisland.org.