A Positive Spin for ALS Turns A Page

The Positive Spin for ALS Turns A Page

 

On September 9, 2012, the "Positive Spin for ALS" got a make-over. The ALS Association renamed the fund raiser “Ride to Defeat ALS” and is using it as a template for other rides across the country. An 18th birthday seems like a good time to tell a coming-of- age story.  

A diagnosis with a neuromuscular disease is what spurred me to create the event. My disease, spinal muscular atrophy, has been a very slowly developing condition. Every time I hit the dance floor, or rake leaves, or put on my shirt, I'm grateful for its slow progress.

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“You don't have ALS," my neurologist at MGH told me in 1993. I'd gone through months of testing to determine why my left arm and shoulder felt weak and wouldn't keep up the repetitions during my aerobics classes. The disease I was diagnosed with, spinal muscular atrophy (SMA), was progressive but non-fatal.

Many of the men and women who had been in the Massachusetts General Hospital waiting room with me got the devastating news they'd contracted ALS, a neurodegenerative disease known better as “Lou Gehrig's Disease”. I felt I'd been spared and wondered why. I vowed to do something for others who weren't as lucky.

As a fourth grade teacher with summers off, I’d spent several vacations making long distance bike rides with destinations from Montreal, to Westport, CT to Truro on Cape Cod. Why not combine my love of cycling with a new twist – raising money for ALS.

So in 1995 I created the "Positive Spin for ALS", a solo 87-mile bike trek from Plymouth Rock in Plymouth, MA to Provincetown, MA. I sent appeal letters to everyone I knew, explained  why I was riding and how  their contributions would help. 2004 marked the last year of my 34 year career teaching fourth graders in  Brookline, MA, and the tenth and final year raising money for the ALS Association with my solo Positive Spin. I raised over $300,000 for the ALS cause.

Myke Farricker, co-owner of The Longfellow Club in Wayland, MA lost his brother Pete, a world champion ultimate frisbee player, to ALS in 2001. Myke was one of the organizers of the Ride4ALS in Wayland, MA, that raised money for ALS in 2001 and 2002.

In 2003, Myke and I merged the rides under the brand "Positive Spin for ALS," a fund raiser that continues to roll with 70, 50, 25, and 10 mile routes that start and end at The Longfellow Club in Wayland, MA. The 25-mile route, Pete's Ride, is named in memory of Myke's brother. Concurrent with the rides from Wayoand, I continued a solo version of the Positive Spin from Plymouth Rock to Provincetown in 2003 and 2004, my final fund raising ride.

Proceeds from the ride support research to find a cure and patient service programs sponsored by the ALS Association MA Chapter. Since its inception, the “Positive Spin for ALS” has raised close to 1.5 million dollars for the ALS cause. I’m proud to have raised over $300,000 in my ten years of Positive Spins (1995-2004). The 18th ride took place on September 9 and raised over $110,000.

Beginning in 2003, Myke and I remained at the event's hub at the Longfellow Club in Wayland on the event day. But no way we weren’t going to do some riding ourselves. We began to making short ceremonial Positive Spins in the days following the event, naming them our “Post Spin Spins.”

In 2007, we began a shorter ceremonial ride from Truro, MA to Provincetown, MA. For the first three years, we were joined by Sam Trumbo, whose dad Doug Trumbo died of the disease in 1997. Sam's mom Susan Lyman had helped generate publicity and donations when my ride ended in Provincetown. Susan has always greeted Myke and me at the Pilgrims' First Landing Park at the end of route 6A in Provincetown.

From 1997 to 2004, my Positive Spin ended with a "Roll Call of Honorary Riders," names of men and women, living with or having succumbed to ALS, sent to me by friends or family, a list I packed into my bike bag.

Myke, Susan and I continue the ritual of standing on the jetty at the water's edge in a moment of silence, a tribute to  the “Honorary Riders” who “rode’ with me through the years, to Myke's brother Pete, and Susan's late husband Doug.

This year, the “Positive Spin for ALS”, the country's first bike ride fund raiser to benefit ALS, has been renamed "Ride to Defeat ALS" by the national ALS Association.

Myke and I are proud that the “Positive Spin for ALS” is the template for seven "Ride to Defeat ALS" rides now sponsored by ALS Association chapters around the country. They’re currently held in California, Illinois, Florida, Michigan, Oregon, Washington, and Massachusetts.

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Myke Farricker and Paul Tamburello finish their "Post Spin Spin" in Provincetown, MA on September 28, 2012

Susan Lyman of Provincetown has been connected to the Positive Spin since 1998.

Paul, Myke, and Sam Trumbo (from 2007-2010) have made ceremonial rides from Truro, MA to Provincetown, MA

Comments

[Mary Seppi]

Super cool, Paul, congratulations for this incredible accomplishment!
See you in Chile

[Kim Cromwell]

Paul, you continue to inspire. Way to go! Congratulations. I can imagine our friend Reeve smiling right now....

[Diana Cullum-Dugan]

You're simply awesome, Man. Would love some you time. I know you're a jet-setter but if you're around any, give a shout.

[Paul A. Tamburello, Jr. aka pt at large]

Thanks,Kim
I'm so touched by your comment. I thought of her and the Reevettes as I rode by Bradford Street and remembered the times you read the list with me.

[Ann Baker]

Congrats ! I knew you did this ride. I did not know you founded the ride. You are making a difference.

[Kristen Eichleay]

Congratulations, Paul! This is a huge accomplishment!

[Suzanne Kavet]

Great job PT!

[Suzanne Steele]

I had no idea.
Wonderful!
Congratulations on making such a huge contribution.

[Carolyn Liesy]

I have a friend whose brother is dying of ALS and I sent this newsletter to her. It is a good thing you did when you organized the rides. And boy are you lucky you did not have ALS.

[Paul A. Tamburello, Jr aka pt at large]

The reasons I began the ride - to express gratitude and compassion.