Dancing to the beat and singing to the melody to find a cure for FSHD

I’m a member of the Western Pennsylvania chapter of the FSHD Society, which serves as a support group and a partner in the nationwide Walk & Roll to Cure FSHD campaign aimed at raising funds for the search for a cure for facioscapulohumeral muscular dystrophy (FSHD).

The Walk & Roll campaign strives to raise about $1 million annually across the country. This year, our Western Pennsylvania chapter raised over $85,000. Personally, I was able to raise a little over $1,300.

Our chapter’s president, Mark Christman, is the driving force behind our efforts. Mark, who has FSHD, is a retired lawyer and business leader from Pittsburgh. He uses his business contacts to drive the annual campaign.

Trib Total Media, where Mark formerly served as a board member, is the major sponsor of our local event. Mark also takes the lead to secure other business sponsors. The theme of Mark’s comments at this year’s event was “Less FSHD, more cure.” I couldn’t agree more.

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Keep on groovin’

Mark is a bit of a maverick. As I mentioned, the national campaign is Walk & Roll to Cure FSHD. But here in Western Pennsylvania, we have a Drum & Roll event. The fundraising works the same way, with our chapter’s members building teams of supporters who make and solicit donations. But our donors don’t walk. Instead, we have a festive celebration at the end of the campaign that includes a West African drumming group. The group entertains folks and gets them up and moving to the rhythm.

First, the drumming group performs, and then they invite the crowd to join in, after teaching some basic dance steps. At this year’s event on Oct. 26, everyone had a lot of fun, including those who moved and grooved in their wheelchairs. But no one had more fun dancing this year than my 3-year-old grandson, Theo.

FSHD is typically inherited in an autosomal dominant pattern, so I hope that our fundraising efforts will support the research that ensures Theo, and all future members of my family, will never have to face the challenges of FSHD that I’ve had to deal with. I pray that Theo will continue dancing his entire life.

I was also pleased to be invited to add some music to this year’s celebration. It felt good to contribute more than money to the campaign.

I’m grateful that my son, Ryan, and my wife, Wendy, took care of getting my keyboard and other gear into the National Aviary, where the Drum & Roll is held. With a little direction from me, Ryan got everything set up and connected. I played about an hour of gathering music as folks registered, mingled, and enjoyed light refreshments before the activities began.

My arms aren’t working well these days, but my fingers can still move over the keyboard pretty well. Some people told me they were enjoying the music and had a few requests. I’ve played music professionally since I was 13, performing a wide range of genres, including Top 40, country, polka, disco, gospel, contemporary Christian, and more. So the requests weren’t a problem.

I believe that my keyboard playing is a gift from God, who knew what was coming in my life. My dad was a guitarist. He tried to teach me guitar when I was 5 years old, and we battled over that until I was 8, when I switched to the piano. That was mainly because my dad didn’t play the piano. I believe that was all a part of God’s plan for my life. At my current stage of FSHD progression, there’s no way I could play the guitar for more than a few minutes, if at all. However, my piano keyboard is positioned low and directly in front of me, where my arms function most effectively.

Part of my Top 40 band experience involved figuring out chord changes for popular songs on the radio. We always tried to add them to our set list long before any sheet music came out. Again, I think that was part of God’s advanced planning as well. He knew I’d be playing music someday that I couldn’t actually see. After losing my sight in 1989 from a head-on collision with a drunk driver, I quickly returned to playing music. I’ve had no problems since then playing old songs and learning new ones. What a blessing it’s been for me over the years!

Mark already asked if he can pencil me in to play at next year’s Drum & Roll celebration. Of course, I told him yes. Here’s hoping my FSHD progression will allow me to fulfill that promise. As Mark always says, “Less FSHD, more cure!”

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.