Accelerated Cure Project volunteer spotlight

Lindsey of the ACP asked me if I'd be willing to be featured in their newsletter. Sure, I said, and wrote up a story answering the questions she asked. It was long... she'll trim it... but here's the original version I sent.

She asked:

• When did you first get involved with ACP, and why?
• Why did you decide to start Music to Cure MS? (describe a little of Music to Cure MS history and where it is today)
• What do you do to stay positive and motivated?
• Why would you recommend ACP as an organization to be involved with and volunteer at?

My answer:


I first heard about ACP in 2002, not long after it was incorporated (when it was still called The Boston Cure Project), and was intrigued: its goals and plans made so much sense! This was the most positive, active MS-related project I had run across. I wanted to do whatever I could to help.

I had studied music on a professional level, planning to perform opera. My MS diagnosis in 1988 made it clear to me that all the little problems and limitations which had been holding me back for decades were not going away - so it was time to find a new goal. Luckily, I already had experience as a stage director for opera and Gilbert & Sullivan, and it was easy to transition to a life as a stage director, concert organizer, and occasional concert soloist.

By the time I became aware of the ACP, the long hours required for directing were becoming too much for my MS-limited stamina - so it was time to find yet another goal. My desire to help the ACP looked like a good place to start.
I began contacting singers I'd worked with, seeking advice on creating a concert to benefit an organization fighting MS. The responses I got were not, "Is it worth the effort?", but, "When is it happening? What can I sing? How else can I help?"

As I've repeatedly found since starting this annual concert, mentioning MS to performers, audience members, sponsors, or others typically results in some people telling of friends or relatives with MS, and others admitting that they have it themselves. I visit local shops in the month before each concert, offering opportunities to publicize their businesses while supporting a nonprofit working for a worthy cause, and I find myself listening to stories of MS told by business owners who are eager to support us... while performers (including Barbara Quintiliani, the internationally-renowned soprano who performs in spite of her own MS) tell me their own stories. This is a key cause!

The first concert was held in October of 2003 in Arlington, MA. Our performance roster included over 20 solo and/or ensemble singers, three pianists, a 70+ voice children's’ choir, and a conductor. Our roster has shrunk to a more manageable size, but the concert keeps going. Every year I question whether it's worth doing again... and every year it's clear that everyone involved is looking forward to the next one.

We've never raised huge amounts. We've never enjoyed the overflowing audiences my performers deserve. But the concert is continuing, and always gaining new help.

Read about my first ideas in Boston Singers Resource: http://www.bostonsingersresource.org/resources/bsr-spotlights/marion-leeds-carroll/ and then see how the concert has grown over the years: http://singtocurems.org

You ask, what would your advice be for people newly diagnosed with MS?

• MS is different for everyone, and it changes for each MSer as the years go by. Enjoy what you have, don't mourn for what you've lost, and keep looking for the next good thing in your life.

You ask, what do you do to stay positive and motivated?

• I've fought depression all my life, since long before my dx. I often remind myself what I said when I was 19: "I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive." That's one thought that usually gets me over the worst spots. The second: making sure I have positive, happy people near me, doing positive activities, to keep me upbeat. Also essential: admitting my need for rest and solitude. (A friend shared this helpful Dilbert cartoon with me a couple of years ago: http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg)

You ask, why would you recommend ACP as an organization to be involved with and volunteer at?

• I'm tired of fundraising letters, calls and emails from organizations asking me to help them help MS sufferers. (Hello? I have MS myself, and rather than doing something for me, you're asking me to give you money? How can I be sure you're really supporting anyone besides your own paid staff?)

The ACP, on the other hand, doesn't claim to help individuals with MS. It sets out to support researchers as they ask hard questions, find good answers, and share their new knowledge, growing the data base the ACP set up and continues to build. (And we know the ACP, far from enriching itself on the project, is mostly led by volunteers.)

MS is incurable, progressive, and disabling, and we still don't really know what causes it. The ACP is focussed on solving problems that will help us all in the long run.