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These days, wordplay between "fun" and "fundraiser" is ubiquitous (almost as much as "friend" and "friend-raiser). However, when a "fun" claim is backed up with a pleasurable activity like biking to the Jersey Shore, it's hard to begrudge any organization for taking poetic license—especially after learning that Bicycling magazine named BIKE MS: CITY TO SHORE RIDE the “Best Cycling Getaway in NJ.”
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MORE THAN A RIDE
These days, wordplay between "fun" and "fundraiser" is ubiquitous (almost as much as "friend" and "friend-‐raiser). However, when a "fun" claim is backed up with a pleasurable activity like biking to the Jersey Shore, it's hard to begrudge any organization for taking poetic license—especially after learning that Bicycling magazine named BIKE MS: CITY TO SHORE RIDE the “Best Cycling Getaway in NJ.”
Naturally, it is easier for organizations to raise critical funds when the associated events combine attractive features such as recreation, fitness and laid-‐back social interaction. Bike MS is a shining example of how this tactic works.
Says Ian Harris, a nine-‐year veteran of City to Shore, “It’s the best way to show support for the people we love, living with MS—in our own circles, and also to the 14,000 people diagnosed with multiple sclerosis in the Delaware Valley.”
The ride, which takes place September 28-‐29, is as much pleasure as it is purpose.
“From the pre-‐ride pasta dinner, to bike prep, to the gorgeous stretches of New Jersey countryside, to the large number of fans who come out to urge us on along the way, and the final feast when it’s all over,” says Harris. “The ride is a gratifying and unifying experience.”
Not everyone views a 150-‐mile ride in unpredictable weather as "fun," but those who do (7,000+ cyclists), find inspiration in the people, and the cause, they're riding for. This quote lifted from Screens 'N' Spokes' team page states this perspective very memorably:
"We've formed a team for Bike MS because we know that riding 150 miles is nowhere near as difficult as confronting a lifetime with multiple sclerosis."
In case you're not sure what "a lifetime with MS" looks like, here's a not-‐so-‐pleasant primer:
✓ Currently in the Delaware Valley, there are 14,000 people diagnosed (and experiencing symptoms) with MS
✓ There are currently between 350,000 to 500,000 people in the US who have been diagnosed with MS, and 200 people are diagnosed with the disease every week
✓ Most people are diagnosed between the ages of 20 and 50, very active years in a person's life
✓ Drug treatment (Disease Modifying Drugs or DMDs) costs average $62,000 a year nationwide; around $45,000 here in the Delaware Valley. As you'll read here, DMDs are critical for MS patients
✓ About 85 percent of those who are newly diagnosed have the relapsing-‐remitting form of MS.
✓ Without disease-‐modifying therapy, about 50 percent of those diagnosed with relapsing-‐remitting MS will become progressive at 10 years.
✓ Without disease-‐modifying therapy, about one-‐third of those diagnosed with relapsing-‐remitting MS will be using a wheelchair at 20 years.
✓ There are only three FDA-‐approved oral drugs; the rest necessitate injections. One of the more recent drugs is Tecfidera, which cost several hundred million dollars to develop.
✓ Mental side effects (such as depression, loss of confidence, a sense of lost bodily control) often go undiagnosed
✓ Spending for breast cancer research is approximately 8x that of MS
✓ There is no cure for MS, only treatment to slow down the disease's progress
Diagnosing MS is not easy. Many people experience symptoms that don't get labeled as multiple sclerosis until years later. Some can go months or years without experiencing symptoms. Not knowing when another spasm, episode of blurred vision, loss of balance, numbness or tingling, or sensation of weakness in an arm or leg, will occur can cause anxiety. In some cases, it can also hold people back from enjoying their favorite physical activities. But despite the doom many MS patients and their loved ones feel, good things are happening and a growing number of MS patients are living satisfying lives. Much of this is due to the advances in research, made possible through donations, sponsorship and fundraisers organized by the National Multiple Sclerosis Society (NMSS) and similarly aligned nonprofits.
The positive energy emanating from men and women who have been fortunate enough to continue leading fairly normal lives, makes the fight for increased research dollars and reduced medication costs worthwhile. Mind over matter doesn't lesson the burden and discomfort of MS, but it does make the ride feel manageable.
In 2012, Bike MS cyclists have covered 5,396,000 miles across the country and raised $83.6 million. This is critical because without a constant supply of funds, finding a cure for MS would be even more impossible than it already is. Locally, riders are making an impact. In 2012, City to Shore raised $5.6 million the campaign is predicted to raise
another $5.6 million in 2013. The power of pedaling is being felt here in the Delaware Valley, and across the country. Just this week, the US Food and Drug Administration (FDA) has approved a new clinical trial of a groundbreaking strategy using stem cells for the treatment of MS.
It's this transformation of a simple act—riding a bike—that keeps riders like Montgomery County's Harris, active all year long, and year after year.
Over the past nine years, Harris has joined the Great 8 team, and fellow riders locally, for Ride MS events across the country. Like many participants, he has a group of friends who come together annually to tackle the turf, catch up on life happenings, laugh (through the grunting) and honor those suffering from this debilitating disease. Earlier this month, he pedaled his way around Lake Ontario (one of many Great Lakes Breakaway rides), and after the upcoming City to Shore Ride, he'll hit NYC in October for another Ride MS' fundraiser.
Because City to Shore is on his home turf, Harris has been able to include family, as well as a close circle of friends, in the weekend, renting a house at the Jersey Shore, so that everyone can be together and share the experience as a rider or a spectator.
“I like to think of it as a family reunion with a twist,” he says. “It’s an incredibly uplifting time, and every year our circle extends a little bit further to include the new families we’ve met.”
As with many NMSS supporters, Harris joined the cause after learning that a family member had been diagnosed with the disease at age 20. Unable to "fix it," Harris reached out to others familiar with MS, and also researched local organizations that would help him and other family members quickly understand the disease's physical and emotional impact. The Greater Delaware Valley Chapter proved to be a valuable resource. So much so, that Harris became an active volunteer and later, in 2008, a board member. And though he doesn't feel too good about boasting, his cycling participation has earned him recognition as one of the organization's highest-‐totaling fundraisers.
Says Harris, "MS is a different behaving disease. Often people don't understand it, because in most cases, you can't see what the patient is feeling inside. But when you meet someone with a progressive case, it turns your whole perspective around."
One of the ways Harris and his teammates have sustained their own participation and been able to contribute substantial dollars to local and national MS fundraisers is by "thinking like a business." And, he points out, connecting with young patients and their circle of supporters. Working under the moniker, Screens 'N' Spokes, the team, along with some of the finest rock poster artists in the country, has created a line of vibrant, edgy screen-‐printed posters (and race jerseys) helping them gain attention by graphics enthusiasts who see the value in the power of "awesome art" to promote a good cause.
Created in 2007 to benefit the Screens 'N' Spokes bike team in the MS150 City to Shore ride, this tiny non-‐profit's—"2 people and their families and friends"—mission is "raising awareness and money for the National MS Society through art, music and bike riding." Since printing its first poster, Screens 'N' Spokes has raised approximately $10,000 a year.
For Harris, this is just a start.
"Each time I go to our annual [NMSS] meeting, I meet incredibly sharp people who can't do as much because of being immobilized. They have great minds, but are being held back physically. It's easy to understand, if there is any bitterness or anger. Yet, each time I attend these meetings or participate in a ride, everyone I meet, is gracious and thankful. MS is such a debilitating disease. Researchers need to find a cure."
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For more information about Screens 'N' Spokes team member Ian Harris and the rest of the 2013 Great 8 team, visit msgreat8.org. To keep up with all the teams participating in September's Bike MS: City to Shore ride, click here. Registration is still open, so if you're ready to Ride for MS, NMSS is ready for you.