When Michele Wrubel moved to Westport in 2000, she did what many mothers do: She became a “professional volunteer.”
School, synagogue, the arts — she never said no, and soon led a variety of organizations, overseeing everything from ice skating parties and Staples Players parents to getting meals to families in need.
“I’ve loved almost every moment,” Michele says. She was rewarded not with paychecks — she’d earned plenty of those years earlier, as a media supervisor at a New York ad agency — but with the satisfaction of showing her children that “the places that mattered to them also mattered to me.”
She also formed deep friendships with other volunteers. She worked alongside “incredibly talented women” — some in the paid workforce, others not. Some had “graduated” to serve on town political boards. All were among “the brightest people I’ve ever known.”
Michele adds, “I did not realize how much I would learn.” While planning events, balancing budgets and crafting communications, she amassed quite a skill set. She learned how to run meetings, build consensus, raise funds, use technology and motivate people.
She did not realize something else: “How this new knowledge would grant me the courage to do something that would have seemed inconceivable earlier.”
Two years ago, she co-founded Coalition to Cure Calpain 3. The non-profit organization focuses on curing the rare, under-researched and underfunded muscle disease. Michele is one of 43,000 people worldwide who suffers from a deficiency of the calpain 3 enzyme.
She knew for over 2 decades that she had some form of muscular dystrophy. But it took that long to get a specific diagnosis. The prognosis: Her muscles will waste away, and she will be in a wheelchair.
In just 2 years, C3 has assembled a top-notch scientific advisory board; organized the 1st US scientific workshop focused solely on the disease; attracted donors, and will soon sign contracts with 2 research institutions.
“Nearly every day since C3 began, I have drawn on the expertise I gained in my life as a ‘professional volunteer,’ Michele says.
“It gave me the confidence I could build something from nothing, and the ability to do it.”
The only skill that did not seem to transfer was asking people to help. It was one thing, Michele found, to rustle up workers for the PTA or synagogue — efforts that would benefit their own children or community.
However, asking someone she knew to help her out — personally — seemed “selfish.” So she didn’t.
Until last year.
A “wise and wonderful woman” — someone Michele had met through volunteering, of course — told her not to be embarrassed to ask for help. After all, she’d be aiding not just herself, but others living with calpainopathy.
Michele realized she was right. Through Facebook, she soon established the C3 Community, where those with the illness and their loved ones can share their frustrations, challenges and coping mechanisms. It’s turned once-isolated sufferers into a tight-knit group.
Michele’s request for help from friends also led to an idea for the 1st big fundraiser: a benefit concert. As offers to participate flowed in, Michele gratefully said “yes.”
“Songs in the Key of C3” is set for Sunday, November 4 at Fairfield Theatre Company StageOne. An afternoon of music begins with a champagne reception showcasing cellist (and Staples grad) Daneille Merlis.
The presentation of standards, show tunes and surprises includes Westporter Carole Schweid (an original cast member of “A Chorus Line”), Staples grad and Manhattan School of music masters candidate Caitlin Collins, and the fantastic Staples singing group For the Heart.
Westport’s Art Gang — attorney by day, American musical theater aficionado the rest of the time — serves as musical director, accompanist and “heart and soul” of the event.
It wasn’t easy for Michele Wrubel — who helped so many others — ask for help herself. But she’s glad she did.
And I’m glad she asked “06880” to help promote this wonderful cause.
(For more information about “Songs in the Key of C3,” click here.)