On the evening of Oct. 3, the Athol American Legion will fill with music, laughter, and community spirit as friends and neighbors gather for a fundraising dance to benefit the Children’s Tumor Foundation. For Rebecca Bialecki, the event is more than a night out — it’s a chance to fight back against a rare and little-known disease that has reshaped her life.
Rebecca lives with schwannomatosis, the rarest form of neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body. NF has three main types: NF1, which often appears in childhood with skin markings and can lead to significant complications; NF2, typically diagnosed in young adulthood, often involving hearing loss; and schwannomatosis, which usually emerges later in life, bringing chronic pain and neurological symptoms. Together, these conditions affect about 1 in 25,000 people— yet many have never heard of them.
For Rebecca, the warning signs came subtly. In her 40s, she experienced shooting pains like electrical shocks, numbness in her legs, and unexplained fatigue. Like many busy parents and professionals, she pushed through, chalking it up to stress and age. Then, four years ago, what she thought was a routine fatty tumor—a lipoma—turned out to be something far more complicated. A biopsy revealed a schwannoma, a tumor that develops from the nerve’s protective sheath.
An MRI soon followed. When her neurosurgeon turned the screen toward her, Rebecca saw what looked like a snowstorm: dozens of tiny white dots scattered across her torso. Each one was a tumor. Today, more than 40 have been identified, with seven removed so far —luckily without nerve damage.
“It was terrifying,” she recalls. “I had trained in nursing, but I had never even heard of this disease.”
NF tumors are usually benign, but are difficult to remove without damaging nerves. They can cause severe, unpredictable pain, numbness, balance problems, problems with hearing and vision, and heightened risks for cancerous tumors. In Rebecca’s case, they have also forced life changes: early retirement from her role as executive director of a regional workforce board and a decision to step down in April from her town’s select board.
Living with schwannomatosis has meant navigating a cycle of treatments and clinical trials. Rebecca is currently receiving infusions of an experimental drug intended to shrink tumors and reduce pain. It’s her second trial — the first, a migraine medication repurposed for NF, showed no benefit. “The best outcome would be that this new drug works,” she says. “But even then, insurance might not cover it, since it’s so new.”
Daily life has narrowed in small but profound ways. Pain and fatigue make walking long distances difficult, and tremors in her hands forced her to adopt voice-to-text tools to stay connected. Sleep rarely comes in more than two-hour stretches. Yet, she continues to find strength in learning about the disease, advocating for research, participating in NF conferences, and helping others understand invisible illnesses.
Her husband David, who Rebecca says has been “incredibly supportive,” admits the hardest part is the uncertainty. “Every morning starts with the question: are you OK today? You can plan, but you don’t know if pain or fatigue will cancel everything. That’s tough — for her, and for all of us.”
For Rebecca, the dance is not only a fundraiser but also a call to action — a celebration of resilience and community. Volunteers are planning music, a photo booth, snacks, and a lively evening where neighbors can “let their hair down” while supporting a cause that affects far more families than most realize. For tickets, donations, or information, call 978-505-0548.
The Children’s Tumor Foundation (CTF), the nonprofit Rebecca is raising money for, funds the research that led to the first FDA-approved drug for NF1 in children and supports cutting-edge gene studies that may one day stop NF at its root. Each dollar raised through local efforts like Rebecca’s helps keep that momentum alive.
As Rebecca faces the challenges of her illness and reaches out to support others similarly affected, she pauses for just a moment.
Amid all the uncertainty and the bouts of severe pain, Rebecca emphasizes kindness. “There are a lot of people out there struggling with invisible conditions. So just be kind,” she says.
On Oct. 3, as the music plays and the dance floor fills, her community will carry that message forward — one step at a time.
Mitchell Grosky is a retired educator and selectman in Athol.