Laying bare awareness on genetic disorder NF
LNomINSTNR » If you happened to be downtown last Sunday and saw two women running around Monument Square and down Main Street in their skivvies, know that it was for a good cause.
Longtime city resident Rebecca Soulliere and Sterling resident Lisa Layton braved the February cold and took it upon themselves to do their own version of a Cupid’s Undie Run together, a charity run benefiting the Children’s Tumor Foundation, which is held in Boston and other cites across the country every year. Like so many other things, the run was canceled
this year due to the pandemic.
Funds raised via donations the runners normally gather benefit the foundation, which is dedicated to neurofibromatosis research and finding a cure. NF, as it is called, is a group of genetic disorders that cause tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. “COVID may have tried to stop us, but we are persistent,” Soulliere wrote on social media following their run. “Thank you from the bottom of my barely clad heart to everyone who donated like a rock star this year. I was the top 5th fundraiser because of YOU. I love you all and we will come back bigger next year!”
Soulliere is the team captain of sorts for Cupid’s Run Shenanigators, a group of close to 100 people who participate in the Boston run and have raised hun
dreds of thousands of dollars over the past several years to benefit the foundation and CureNFwithJack, a nonprofit corporation founded by Jake Burke and Beth O’Brien in honor of their young son, Jack Burke, who has NF.
“It wasn’t a race, it’s awareness and a symbolic gesture of what being exposed and uncomfortable in public is like for many of those with NF,” Soulliere said of her and Layton’s jog. “While it may be perceived as brave, amazing, or otherwise nuts, we are helping to make a difference and we are humans loving humans. If there can be any legacy I wish for, it’s that. Let’s take care of one another.” The team members run for Jack and other children and people who have NF, including Tommy Joffrion, a 15-year-old Leominster resident who was diagnosed with NF at 18 months old. Tommy and his mother Maria Joffrion were there on Sunday to cheer Soulliere and Layton on.
“Rebecca is a force to be reckoned with,” Maria Joffrion said. “She is amazing and not a person
that would sit this out. She is committed to this cause and I am eternally grateful to her for taking it on. Parents of kids with medical conditions are exhausted. When someone on the outside takes on a slice of their worry, of their ‘jobs,’ it is a priceless gift. I am so grateful to both Rebecca and Lisa for braving the cold and braving the day alone, unable to hide in the crowd. They are amazing and brave, and I love them.”
Maria Joffrion said she “briefly” participated in one of the Boston runs, although she and Tommy usually go to see off the bus “filled with Leominster’s fin
est” each year.
“I went to cheer on the team, dressed, and then ran with them,” Maria Joffrion said of her previous run. “When we meet them, I try to put our gratitude into words, which is impossible, but we hug and see them off, honking at the bus as they all wave and blow kisses at us then they go kick butt. It is awesome to see them all do this for Tommy and Jack. I can’t say enough how grateful we are.”
Soulliere said she is determined to keep awareness for NF going — even if that means running around her hometown in the dead of winter in their un
derwear.
“It gives me insane social anxiety and unleashes all of my insecurities, believe it or not,” she said. “But I do not have neurofibromatosis, so I pull up my big girl panties and I do this for those who have to face an oftentimes mean world with their visible effects of their disease. Exposed. Uncomfortable. We do this for awareness, empathy, and compassion, on top of helping to fund critical drugs and research to improve their lives.”
Soulliere’s Cupid’s Undies Run fundraiser runs through today. To donate, visit https://my.cupids.org/RebeccaSoulliere.