pt at large

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.

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.

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 would remain 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 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.

This year, the “Positive Spin for ALS”, the 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

Bill Ives: A magnet for Louisiana music, food, and culture

My friend Bill Ives, born in New Orleans, is a big time music lover. Now living in Cambridge, MA, Bill incorporates a ton of his business and cultural interests , including a huge helping about New Orleans, in his blog. His grandmother ran the well-known Columns Hotel on St. Charles Avenue in the 1950s.

Bill spent a week in mid-December driving from New Orleans to Lafayette, Eunice, Opelousas, Henderson, then back to New Orleans. He planned a jam-packed itinerary - restaurants, dance halls, museums - even one radio station where he met with Herman Fuselier, radio host with a deep understanding of roots to blues music, entertainment writer, and TV show host, at his office for KRVS in Opelousas.

Bill and I have regular pow-wows before and after our trips to Louisiana. Check out his latest post about his December trip. You'll get an idea of just how much fun he can pack into one week!

Scroll down the "Categories" list on the right side and click on New Orleans and Louisiana to find great photo essays about Louisiana, including all the posts about this one. And stay tuned...there are more to come!

 

Festival International de Louisiane Dispatch 2: On the road to Lafayette

2011 Festival International de Louisiane Dispatch2
Dallas/Fort Worth Airport, 2:30 PM Wednesday afternoon April 26, 2011

“Is this the line for the Lafayette flight?” I ask the young man with the Mohawk hair and black army boots standing next to a tall slender young black man.

“Oui, J’espere,” he says, "I 'ope so."

“Are you playing in the festival?” says I, glancing at the guitar case in his hand.

“Yes, we’re from Montreal, we’re playing Friday night around 7 pm. It’s our first time here.”

“What’s the name of your group?” the woman behind me says, “I’m volunteering at the festival.”

“We’re called Ngabo,” he says, pronouncing it twice so we get the African lilt to it.

So it goes. There are thousands of people from all over the country heading for Lafayette for the Festival Internationale de Louisiane that begins tomorrow. For the next hour, several of them tell me their stories as we sit on the plane waiting for it to take off.

Claire: “My friend Dana Cañedo runs the whole thing. I’m a teacher. I’m coming back early from our school vacation week to volunteer at one of the booths.”
“Don’t even try to drive to the downtown area and don’t take a taxi. Take one of the shuttle buses from the Cajundome that will drop you off downtown.”

With that she punches some buttons on her iPhone and shows me the festival layout.

“Look for Dana in a golf cart whizzing all over the festival area. She’s been doing this for years.”

A woman with her husband one row back. “It’s the largest Francophone festival in the US. There will be upwards of 100,000 people there.”

Claire: “You wont have any trouble writing stories. People down here are really friendly.” Claire and several passengers are Exhibit A.

Claire: “Watch out for the festival punch. It’s sweet and refreshing but loaded with alcohol. They go down easy, not so easy going out,” she laughs.

The woman across the aisle concurs.  “Go easy on them. We've all learned.”

Claire: “Don’t’ miss the Walkabout on Friday afternoon, food demonstrations in several locations. You can eat your way through it!”

Woman one row back: “We never miss it, we used to take our kids there every year to the Place des Enfants. There’s a big fountain near Vermillion Street where the kids love to frolic. One of the best years was when the Burundi Drummers organized an impromptu parade down the street. Our girls got right in! It’s a good family festival. Local people love it, people from all walks of life take it in.””

A young woman in the seat across from me pipes up “Will there be dance lessons?” Recently engaged, she’s bringing her California fiancé to her hometown to meet her parents. The fellow looks slightly nervous. It’s one thing to meet your future in-laws. It’s another to do it while learning to dance and eating food you’ve never seen in California.

“Just watch everybody else,” says the woman in the row behind her. “It’s a syncopated dance, listen to the music and move your feet!”

On the jetway as we exit the plane I walk with the white fellow with the Mohawk and the big excited smile. “What’s your name? I’m Andrew, “ he says.

“How did you get invited?”

“Zach Richard heard us play in Quebec and invited us to come for the festival. We’re really not known around here at all. We pay our own way but are happy to be part of the experience. Our music is electronica with African influences,” Andrew says.

The tall young black man turns out to be the singer Ngabo. He doesn’t say anything but if his smile is any barometer, he’s happy to be expanding his horizons way beyond Montreal. And like hundreds of other musicians here, he’ll make new friends and he’ll absorb every note and style he hears. There’s no telling how the cross pollination of musical styles will show up in each musician’s creative future…but it will.

And that fellow from California, he’ll be fine. If ever you want learn a dance or to make a friend by the time you can finish a beer or plate of red beans and rice, Lafayette is the place.

I am Exhibit A for that one.

The 16th Positive Spin for ALS: Powered by "Wheels"

16th Positive Spin for ALS
The Longfellow Club
Boston Post Road
Wayland, MA
Sponsored by the ALS Association MA Chapter

The 16th Positive Spin for ALS kicked into gear on Sunday, June 13. One hundred fifty seven participants biked from the Longfellow Club in Wayland through some of the most picturesque countryside in eastern Massachusetts.

They rode for their fathers, their mothers, their sons, daughters, neighbors, friends, colleagues - all of whom are among the 5600 people diagnosed every year with amyotrophic lateral sclerosis, ALS .

For the riders, pedaling one of the 10, 25, 50, or 70 mile courses today was a personal salvo against the cruelest of all neurological diseases.

ALS, also known as "Lou Gehrig's Disease," is a progressive, fatal disease that attacks motor neurons in the brain and spinal cord that control functions such as walking, talking and breathing. Symptoms include muscular wasting, loss of speech, and eventual total paralysis. Identified in 1869, there is no known cure for it...yet.

The ride raised money to support research for a cure for the disease and for the ALS Massachusetts Chapter’s outstanding programs for patients and caregivers in the region.

The special wrinkle in this year’s event was the arrival of a sea of riders in orange T shirts. The fifty Orange shirted men and women all had a connection with the late Pete “Wheels” Farricker, who died of the disease ten years ago.   

Pete Farricker was an Ultimate Frisbee legend whose fame crested on his athletic ability, big-hearted nature, goofy sense of humor, and life-affirming personality. His fierce competitive spirit at the highest level of the sport was matched to a sense of fair play that is the bedrock of this highly charged, fast paced game. 

If the General Mills Company had any sense at all, they would have stuck Pete’s face on their Wheaties Box for a season honoring his membership on National and World Ultimate Frisbee Championship teams.

“We were devastated when Pete emailed us to tell us of his illness in 1999.  We were in our late 30s, not really at that time in our life when mortality was in the lexicon,” former teammate Phil Adams said.

“We mobilized. We organized a reflection/celebration of Pete's life about 6 weeks before he passed, and from that we launched the Peter Farricker Foundation to do two things.  Name Ultimate's “Spirit of the Game” trophy after Pete (kind of like Hockey's Lady Byng trophy) with an endowment to fund it in perpetuity, and raise money for ALS.”
 
The Pete Farricker Spirit Award is given to the player in the open division of the USA Ultimate's Club Championship Series adjudged to have exhibited personal responsibility, integrity, and fairness combined with a high standard of playing ability.
 
Phil Adams, one of six members of the board of directors of the Peter Farricker Foundation, has been the spark plug in the foundation’s engine for the past few years, nudging Pete’s friends to ride in the Positive Spin for ALS. Last year, as about 20 former Ultimate Frisbee jocks huddled around the BBQ after riding the 2009 PSALS, Adams nudged a little harder.
 
"This is great that we can get people to ride in Wayland, but can't we also have our buddies who can't make it to Wayland ride "with us" wherever they are?  Can't Fin ride in Boulder, and Jimmy in San Diego and Gus in Jacksonville, and Kent in Park City?" Adams asked.

Never underestimate this group. Pete Farricker was family to these guys who competed with him when they were twenty something and invincible. Now the guys are family men, businessmen, and immersed in their disparate communities. They’re older, have lost their fleetness afoot but not their fond memories of a man who played hard and made the game fun. They showed up with their checkbooks.

Sunday afternoon, Phil Adams presented a check for $10,000 to ALS Association Massachusetts Chapter President Debra Sharpe.

Photo: T.J. Reilly, Partner at New York Life Insurance Company, Providence, RI and Chairman of the ALS Association MA Chapter Board of Directors; Myke Farricker, key event organizer and co-owner of the Longfellow Clubs; Phil Adams, Chairman of the Peter Farricker Foundation; Debra Sharpe, President of the ALS Association MA Chapter; Paul Tamburello, founder of  A Positive Spin for ALS

Pete’s former team mates are spread across the country. The Positive Spin for ALS in Wayland wasn’t the only place they gathered to raise money and honor his memory. Pete Farricker “Spirit Of The Game” events took place all across the land. Ten years after his death, Pete’s shadow has stretched way beyond the 70 by 40 yard dimensions of the regulation Frisbee field.

“We had over 125 people in 19 locations riding or mountain biking or playing ultimate or walking or playing disc golf or doing Yoga - in the name of Pete… and Ultimate's "spirit of the game" Adams said.

Transforming grief into energy to find a cure for ALS and to support patients and caregivers was what I had in mind when I founded the Positive Spin for ALS in 1995. Pete Farricker's team mates are putting their own spin on the concept.

Photo: Steve Mooney and Myke Farricker of the Peter Farricker Foundation and Paul Tamburello

Pete’s brother Myke Farricker is co-owner of the Longfellow Clubs in Wayland and Natick. Since 2003, Myke has been on site from dawn to dusk on the day of the Spin. A master at event logistics, he has arranged to have his crew set up tents for registration, medical staffing and food, and cook hundreds of burgers and hot dogs for hungry riders. All done with a smile and trademark Farricker wise-ass humor.

The “Wheels” are already in gear for next year. Those orange T shirts will be visible again in 2011. Whether they’re riding in the Positive Spin for ALS in Wayland or creating their own mini events across the country, they’re taking the “Spirit Of The Game” to a higher level.

 

 Zoe Farricker, Myke Farricker, Paul Tamburello, Ian Polombo, who completed the 25 mile ride ("Pete's Ride")
 

Myke Farricker and veteran volunteers Pat Gill and Donna Cook, who baked 300 cookies for the event.