Michele Wrubel’s “Songs In The Key Of C3”

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.”

Michele Wrubel

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.

Staples’ “For the Heart” singing group, in 2011.

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.)

11 responses to “Michele Wrubel’s “Songs In The Key Of C3”

  1. Thank you for bringing this cause and the event on Nov 4 to our attention.
    Michele Wrubel has a great, strong spirit and I have no doubt at all that she will make a difference in addressing this challenge. Go, Michele!

  2. Mrs. Essagof

    Michele Wrubel is one of the sweetest, hard working volunteers I have ever had the pleasure of working with at the Greens Farms School Library Media Center. Whatever she was asked to do she did well and always with that lovely smile. Not only did she do everything well, she was always fun to have around. I can’t thank her enough for all she did for us at GFS. I miss having her and her kids around. Nothing in this article surprises me. Amazing woman!-Mrs. Essagof

  3. Michele is not only one of the smartest women I know, but she is tirelessly courageous, an incredible mom, and everything she does she does with grace and humor! She inspires me to be my best self, and I feel lucky to call her friend. Songs in the Key of C3 will be an amazing afternoon of music and love!

  4. Estelle T. Margolis

    An inspiring story, Michele, A million Mazeltovs for all you have done.

    Is there any way I can volunteer to be an usher at the Nov. 4th concert?
    I would love to be there, but the ticket price is forbidding.

  5. Go Michelle!!!!

  6. Go, Michele! The concert sounds great.

  7. Kudos to Michele Wrubel for advocating and fundraising for rare disease awareness and treatments. This segment of the population gets ignored way too often- and yes, is budget cut first, too often. Its often the self-starter sufferers themselves who have to reach out and “make it happen.”

    The whole idea is quite melodic. (“Key of C3” as a title — wonderful). I hope C3 hopes to join N.O.R.D (out of Danbury) and EURODIS, and take advantage of Google Grants (google it) available to them for free as a 501 (c)(3), as well. I’ve personally seen them very effective in widespread audience awareness expansion and donations increase.

    • Michele Wrubel

      Thanks, JT, for the information about Google Grants. This was a new resource to me, and I just filed a grant application with them. It is always great when people in the know share information! And thanks to everyone for their lovely and humbling comments and support… just reinforces what I already know… that our community is a special one!

      • Best of luck Michele 🙂
        I will shoot you an email from your website should you need further assistance with Grant, After its approved, I believe you also qualify for free donations processing as an add-on function, to eliminate credit card merchant fees. This piece of their various offerings comes and goes, though.

        If you haven’t already, consider joining: http://www.rarediseaseday.org.

        Also, “Genetics Day on the Hill,” (sponsored by Genetic Alliance http://www.geneticalliance.org — the world’s leading nonprofit health advocacy group), where you can go to Washington to have your voice heard by Senators and House Reps, and meet with them, one-on-one.

        Glad to be of help.

  8. This event will be sectacular and Michele you are too!