How the MGFA National Patient Conference Galvanized Two Volunteers
By Kathleen Timothy
At the MGFA National Patient Conference in April 2025, two strangers, Janel and Steve, found themselves in the same room, sitting in different areas, completely unaware of each other. That changed when Janel stepped on stage to share her MG journey during a panel discussion.
In the audience sat Steve, newly diagnosed and attending his first MGFA event. As he listened to Janel speak, one detail made him sit up a little straighter: she mentioned she was from Maine.
“Oh my gosh,” Steve thought. “She’s basically my neighbor. I have to meet her!”
By “neighbor,” Steve meant they lived in neighboring states, about three hours apart. But in that moment, battling a rare disease not many people have heard of, three hours felt like no distance at all.
Steve and Janel exchanged contact information at the conference and kept in touch.
Soon after returning home, Steve received a call from Janel. She shared how much she appreciated his positivity and enthusiasm and asked if he’d consider becoming co-leader of the Northern New England Support Group, which she runs. Without hesitation, Steve agreed.
Since then, the two have joined forces. They have attended the Community Health Fair and MG Walk in Boston and are connecting with other members of the MG community in the region.
Janel has been a passionate and dedicated volunteer with the MGFA for several years. She serves as an MG Friend, leads two support groups—Parents with MG and Northern New England—and is involved with a special project to expand the Partners in MG Care program. In addition, she is one of MGFA’s Ambassadors, focusing on MG awareness, support, and patient education.
When asked why he volunteers, Steve simply says it’s about the camaraderie and the gift of connecting with others who truly understand. Now retired, Steve is enjoying life with his wife, Cate, and their Bernese mountain dog, Oakley. Together, they embrace the outdoors, especially camping, and are savoring this new chapter of life, filled with purpose, friendship, and community.
When she’s not volunteering, Janel enjoys being outdoors, painting, crocheting, and sharing quality moments with friends and family. Asked how she first became involved with volunteering, she laughs and admits she “just kind of fell into it once I was strong enough.” But when it came time to decide where to dedicate her energy, the choice was clear. “There are many places I could volunteer,” she says, “but my passion is with the MG community and the MGFA.”
Supporting other MG patients in need is deeply meaningful for Janel because she has been there, too.
“I remember what it was like when I was first diagnosed and felt so alone,” she says. “I don’t want anyone else to feel that way. I really value the connections I’ve made as a volunteer, and I love the opportunity to keep learning and to share that knowledge with others.”
Steve still lights up when he talks about his experience at the MGFA’s largest patient and family gathering. He left feeling energized, hopeful, and—most importantly—not alone.
Janel and Steve’s story is a powerful reminder of the connections that can happen when people come together with shared experiences and open hearts. What began as a chance encounter has grown into a meaningful partnership rooted in support, education, and a deep commitment to helping others navigate life with MG.
Like so many MGFA volunteers, they exemplify the spirit of the MG Community: resilient, compassionate, and dedicated to making sure no one has to face this journey alone.