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This is why we volunteer

Written by on May 23, 2014 at 12:42 pm

All of us who volunteer or raise money for the National MS Society do so because we usually have a connection with a family member or friend who has MS. My connection is my brother-in-law John.

John Scannell

Mike Kizner (left) finds inspiration in his brother-in-law, John Scannell.

John was nearing fifty years of age when he first noticed changes with his vision and other telltale signs that he knew were out of the ordinary. Thirteen years ago, John was diagnosed with MS, which over the years has developed into secondary-progressive. When flairs do occur, the recovery is usually not complete, so permanent disabilities accumulate. Through the years, John has become more dependent on leg braces, walkers and occasionally wheelchairs. He does not look for sympathy or complain about these daily challenges but instead lives each day with his head held high.

Although John won't be able to run the 100-yard dash, that has not stopped him from keeping his spirits high with the hope that soon we will find a cure that ends MS forever.

Mike has been involved with MS Challenge Walk since 2004. His connection to MS is with his brother-in-law, who was diagnosed in 2000. Mike has been a crew member and Team Lead with the Activity Tent and supports the Falmouth (ME) office, where he coordinates their yearly Plane Pull event. In 2013, Mike will be helping the Lunch Bunch Crew under the watchful eyes of his wife Sharon, who is Crew Leader.

Challenge yourself to walk in Challenge Walk

Written by on November 27, 2013 at 3:14 pm

I was diagnosed with MS on November 5, 2007. It took a solid year for me to fully comprehend what the words "you have MS" meant. Having experienced a multitude of unexplained neurological symptoms leading to my diagnosis, my first reaction was one of relief. I'd convinced myself I had a brain tumor. A year later, after spending many hours reading about MS and experiencing two flairs, I began to realize just what this diagnosis might mean for my future.

I decided to volunteer at the National MS Society offices in Waltham and quickly found myself surrounded by an incredible gathering of people — positive, upbeat people determined to make a difference. And it was here that I was introduced to the Challenge Walk.

I remember my first discussion with Brenda Barbour, Associate Vice President of Volunteer Development at the Greater New England Chapter — aka, Mama Hen — about the walk. "Let me get this straight," I said. "Almost 600 people and several hundred volunteers get together to walk for 3 days and 50 miles on Cape Cod? And many of these walkers and volunteers have MS?" "That's right," Brenda said with her trademark wink and southern drawl. Brenda assured me that, should I accept this challenge, the experience would change my life.

And change my life it did. My first Challenge Walk was September of 2011. Brenda was right. The experience had a deep and profound impact on me and I have been at every walk since. That's when I learned that bravery is not the absence of fear — it is action in the face of fear!

The Derick family

Walking is a family activity in the Derick household!


At Challenge Walk, I met a group of incredibly committed, compassionate and tough people! These walkers and volunteers are truly a part of a large and ever-expanding family. Multiple sclerosis is the rallying call for this event; it is the cause for which this family pulls together. But the result is much more than raising money for a cure! The result is everlasting, deep, lifelong friendships. Through these friendships, I have learned to face my fears and act!

Over the years, I have met countless people in the Challenge Walk community who have shown by example that those of us living with MS do not have to relinquish control of our lives to this disease. I have learned from this community to make a choice not to be defined by this disease. In joining them I joined a group with a sense of purpose.

When you register for Challenge Walk, you agree to meet several challenges. First, the fundraising: $1,500 is the minimum required for each walker. Then there's the physical challenge. I can tell you that 50 miles is a long, long way to walk, with or without MS! The final challenge is time. As a walker or volunteer, you agree to give up an entire three-day weekend in September. You also need to prepare by training, attending meetings, raising money …. the list goes on and on!

It would be easy to sit on the sidelines complaining about a lack of resources. "I can't raise $1,500 — I don't know enough people!" "I could never participate in this, not with my physical limitations!" "I just don't have time to commit to something like this!"

But the Challenge Walk is a community founded on resourcefulness! Fundraising is done with incredible creativity. Folks come together to host fundraisers, from comedy nights to cocktail parties, from harbor cruises to pub crawls — the list is seemingly endless! On walk weekend, you will see people overcome incredible physical challenges to participate in the walk. Whether wheeling the route, using canes, walkers or other mobility aids, or simply walking until their body has had enough, all these people choose to participate any way they can.

Finally, throughout the year, walkers and volunteers find the time (or make the time) to engage in the year-round preparation for the walk's weekend. As I found out first-hand, once you participate in one Challenge Walk, you will be back. It is just that powerful of an experience!

If you haven't joined this community yet — what are you waiting for? There is plenty of room for you here and an entire community ready to help you engage. Come on out and join the family!

Jim was diagnosed with MS in 2007. Upon hearing of his diagnosis, Kristen and Paul Bello, owners of Chili Head Barbecue Restaurant in West Bridgewater, held a community fundraiser in Jim's name. Motivated by this incredible outpouring of support, Jim launched the Chili Head Strider Walk team in 2008.  The team completed two walks in Easton before stepping up to MS Challenge Walk in 2010.  The Striders will walk until a cure is found!

When sitting on the sidelines is not an option

Written by on May 6, 2013 at 12:22 pm

I recently made an unexpected decision to register for this year's MS Challenge Walk, 3-day, 50-mile option on Cape Cod. I say "unexpected" because I anticipated the Cape MS Challenge Walk I proudly completed in 2003 to be a once-in-a-lifetime event. That changed late last year after receiving continuing news that too many of the volunteers activists I have worked with closely were experiencing a changing, progressive course in their disease. Some with primary and secondary progressive MS were now facing other significant underlying health challenges.

Sarah, an extraordinary chapter volunteer and MS activist, inspired my decision to walk this year. Sarah has completed the chapter's MS Challenge Walk every year since its inception with a team of family and friends. Having supported Sarah, I knew I could not simply cheer her on or donate this time. Sitting on the sidelines is not an option for me this year. I do not have MS, and I can walk without difficulty — yet I do not take this for granted. The totality of the impact of primary and secondary progressive MS is both professional and at times unexpectedly personal.

As an MS activist, I know meaningful strides made collectively improve people's lives, one step at a time. MS Challenge walkers are truly activists, too. Advancing public policies that address gaps in community supports and removing barriers to health care for those with more progressed forms of MS is critical. Funding for biomedical research and daily support is just as vital and additional funding is needed. All of us collectively are contributing toward this goal. While a treatment or medication for primary progressive MS remains elusive, the progress in recent years is very encouraging. I want in some small way to expedite this process and provide additional support to individuals facing progressed MS.

I am honored to join the Sarah's Sponsors team which includes Abby & Jamie — two MS colleague activists! My personal focus and motivation is progressive MS and the individuals who inspire me facing the challenges of disease progression.

I thank everyone for their commitment to this event and I hope I have the opportunity to meet many of you along the route in September!

Michelle has been a staff member for the Greater New England Chapter of the National Multiple Sclerosis Society since 2000. She currently serves as the Director of Public Policy Advocacy and works with volunteer activists and lawmakers in Massachusetts, Maine, New Hampshire, and Vermont. She most recently lead the chapter's delegation at the 22nd annual MS Public Policy Conference in Washington D.C.

Notes of support from the trail

Written by on September 13, 2012 at 3:56 pm

In the eight years I've participated in MS Challenge Walk, I've made plenty of connections. From friends and family who support my training and fundraising, to the steering committee that tolerates my off-the-wall ideas, to the walkers and crew who cheer each other on, the relationships formed around this three-day weekend are ones that I cherish year-round.

This year, not only did I receive notes of encouragement before the walk, but I had more letters waiting for me even after I arrived on the Cape. A former formal member of Gordon's Team and now an honorary one, I arrived at their annual pre-walk homestead to find a sealed message waiting for me. It came from one of the team's youngest members, Emma, who this year made the transition from crew to walker. Here's what she wrote:

Letter from Emma

A transcript follows:

Dear Ken,

Excited for another year? I know I am. I just want to say how glad I am that you decided to be a part of this. It has shown me how pure determination and hope can form amazing friendships. No matter what team you are listed under officially, there will always be a spot for you on Gordon's Team, and we will always claim you as one of us. So thank you for everything you have brought to our team. Thanks for a smile along the route (which I'm sure I will need this year), that trolley ride (it is in my top walk memories), and a friendship the whole family holds dear.

Smiles,
Emma

What a wonderful way to start the walk! How could I not be eager to get out there and support this family, without whom I never would've heard about or joined MS Challenge Walk?

That wasn't the last note of support I'd find that weekend. A friend who spent her Labor Day weekend on Cape Cod knew I'd soon be following in her footsteps, so she stopped by Nickerson State Park — better known to us as Day 2, Rest Stop #1. There, she engaged in a bit of letterboxing, a distant cousin of geocaching. At a specific place in the park, she left me a message, one I could find only by following these clues:

This is a "drive-by", "walk-by" or "bicycle-by" letterbox with one caveat. It is located right off Flax Pond Rd, and this road is very busy with cars coming to and from one of the park boat ramps. If traveling by car, it would be best to enter the Area 5 campground, and park near the Restrooms. [Proceed] down Flax Pond Rd until you see a large glacial erratic on your right. Approach on foot, and look into the "jaws" of the boulder. The Nickerson State Park Letterbox is hidden inside.

Near the end of the walk's first day, where I found Pocahontas handing out hugs to walkers just 0.42 miles from the Cape Cod Sea Camps, I abandoned my post and took a detour off our prescribed route to follow the above instructions. I wasn't far into the park when I found the boulder in question.

A large boulder in Nickerson State Park

I dismounted my bicycle, climbed into the "jaws", reached my hand in… and came out with this!

Letter from Cara

My thanks to Cara and her fiddler crab for taking the time and effort to support me and all our walkers! And to everyone else who let their humanity shine this challenging weekend. Before, during, or after, be it a hug, a tweet, or these letters, there's no limit to the support to be found at MS Challenge Walk.

Ken joined the MS Challenge Walk in 2005, more than a decade after his mother was diagnosed. After walking for three years and 150 miles, he switched to the support crew and now rides his bicycle along the trail, providing whatever encouragement (and snacks!) he can to the 600 walkers. He is also an alumnus of the event's steering committee and is this site's webmaster.

A heartfelt thanks for all those who DO!

Written by on September 12, 2012 at 2:53 pm

Participants in the past several years of MS Challenge Walk have borne witness to a most incredible and inspiring individual: Carolyn Rossi, who wheels herself up, down, and across Cape Cod in pursuit of a cure for multiple sclerosis. I spoke with Carolyn last week in an interview that introduced many walkers to a person whose drive and determination are nearly unparalleled.

But it's not just her fellow walkers who Carolyn inspires. Her husband, Brian, is on the bicycle support crew, and two years ago shared with us how he marvels at his wife's strength. This year, he has these thoughts about the importance his fellow crew play not just to the walk as a whole, but to the intensely personal experience that is his and Carolyn's MS Challenge Walk. Here is Brian in his own words.

The MS Challenge Walk is one of those annual events that occur when, regardless of anything else going on in our lives or around us, we can come together as one united family to fight for a great cause! Year after year, people make the trek to the Cape and lace up their shoes, pump up their tires, purchase ample amounts of Body Glide products, and tough it out for three long hard days. We arrive on Thursday evenings and for the next hour or more, we embrace and do lots of catching up with our "family" members that we haven't seen in about a year. It is truly awesome!

I'd like to personally thank each and every person and team that participates in this event. I'd like to especially thank all of the unsung heroes of the MS Walk that work behind the scenes or do something as simple as handing out candy, bananas, granola bars, water, gatorade, etc at the many rest stops. If any one of these important people were missing, the event just would not be the same.

I'd like to extend a special thanks to my fellow bike crew members. First, thank you for welcoming me in to the fold year after year. Most important, thank you from the bottom of my heart for being the silent and for some, not so silent guardians to my love, Carolyn Rossi. Each year, one or more of you ease my worries about her whereabouts by making a friendly cell phone call to give me here current location. This year, Todd called me on Saturday to let me know that she was ready for lunch, and if I didn't get there soon with her lunch, she'd "rip my head off!" When I arrived at the welcome center leading up to the lunch stop, he was right there with her keeping her safe.

Carolyn Rossi on Setucket Hill (2012)

Rob L. personally had the honor of escorting her up Setucket Road (Hill) this year as she took on a challenge like none other before. This year she challenged herself to walk up as much of that hill as she could and Rob was by her side each step of the way keeping her safe. In years past, Billy has been by her side keeping her safe and challenging her to push even further. To the other bike crew members who have assisted Carolyn this year and in years past, I thank you from the bottom of my heart for protecting her and being her guardians on bikes. This year, I even saw Dave personally escorting her down the streets of Brewster with his white motorcycle with the trailer attached. Thank you all so much for selflessly giving of your time and attention and for loving Carolyn!

I don't know if many people can understand this or not, but being Carolyn's husband is a tough place to be on the Walk weekend. For me, the walk is solely about Carolyn and her successes and milestones. I try to stay in the background as much as I can. It's not about me! However, nothing blesses me more as her husband than to hear from all of the folks along the route that speak with me privately about how much she inspires them. When I roll in to rest stops on my bike and people see me, they ask, "How is that lovely wife of yours doing" or "Is Carolyn on her way"? This is so moving to witness year after year.

Many of the friends I have made at the MS Challenge Walk have shared with me that seeing Carolyn push herself every year, as difficult as it is, is the high point of their year. I have to agree with that sentiment!!

As awesome as this event is, as much as I love all of you, my true heart's desire is that we didn't have to do this anymore! I'm personally SICK OF IT!!!! Multiple sclerosis took the life of my grandmother — my best friend, someone whom I deeply loved. Today it continues its pesky mission in my wife's life, someone whom I love even more. I see and hear about all of the other "MS Walk Family" members of mine who have been afflicted by it, and it just makes my heart SICK!

So, let's face it folks: the reality is that MS is still around — for now. It's time for people to stop saying and to start doing! It's still attacking people we love! Let's work together in 2013 to bond together AS ONE TEAM to create a world FREE OF MS! Who's with me?

Brian, a resident of Central Massachusetts, has participated for several years in the MS Challenge Walk as a member of the bike support crew.  Not only does his wife Carolyn have MS, but his grandmother had MS and eventually died from complications related to it. Brian is best known to as the provider of tropical flavored Starbursts and Jolly Rancher candies along the trail.

The Hall of heroes that keeps me walking

Written by on August 22, 2012 at 10:05 am

Six years ago, the Nintendo Wii came out. As someone who was raised with Mario and Zelda, I was first in line at the game store to get the new video game console. As I'm also Computerworld's youngest editor, I didn't share this interest with many co-workers, but I nonetheless brought the Wii to our annual editorial retreat, figuring it would be a novelty.

Sure enough, the intuitive way in which the Wii's tennis and bowling games are played made it a hit. As he tried the bowling game himself, one co-worker, Mark Hall, commented that his late mother, an avid bowler, would probably have lived longer had she been able to enjoy her favorite sport in this low-impact, risk-free fashion. I empathized, saying that I hoped my mother would similarly enjoy the Wii, since she's not as physically active since being diagnosed with MS.

Mark paused his swing and looked at me. "My wife has MS," he said — not a secret, but not one we expected to have in common.

Although I was still Computerworld's newest hire, had just met Mark and had never met his wife Cathie, and had been doing the MS Challenge Walk for only two years at that point, I boldly solicited them in my fundraising efforts, sending them a letter that concluded, "I am truly grateful for your support and feel fortunate to be able to walk the paths of Cape Cod for those who cannot." What I received in return was more valuable than any impact on my bottom line.

I have noted on this blog and in person what I first do when I receive someone's donation in the mail: I look not at the value of the check, but at the donor's words of encouragement. Every year, Cathie — whom to this day I have still not met — takes a deeply personal and generous perspective that she shares in a note enclosed with her donation. With her permission, I am sharing her letter this year:

Letter from Cathie Hall

A transcript of the above scan follows:

Dear Ken,

I am compelled to echo your own words, in your fundraising letter:

"I am truly grateful…" for your and others' consistent MS fundraising efforts and participation in MS Challenge Walk(s)!!!!! Year after year.

and

"I feel fortunate…" to have been the beneficiary of consistent support & aid from family, friends, and even strangers during my 30 years face-to-face with MS; to have a life better than I imagined it would be.

I send you Mark's and my contribution to your 2012 Cape Cod 50-mile Challenge Walk for MS; our very best wishes for perfect walking weather, Sept. 7—9; and my deep, heartfelt appreciation for all you do to defeat MS!

Thank you!

Cathie Hall

I am humbled and awed by the spirit of individuals such as Cathie. It is for heroes like them that I am glad to walk, peddle, and cheer my way across Cape Cod time and time again, until it is no longer necessary.

Ken joined the MS Challenge Walk in 2005, more than a decade after his mother was diagnosed. After walking for three years and 150 miles, he switched to the support crew and now rides his bicycle along the trail, providing whatever encouragement (and snacks!) he can to the 600 walkers. He is also an alumnus of the event's steering committee and is this site's webmaster.

Talking with Marianne Dilworth

Written by on June 11, 2012 at 9:00 am

Welcome to MS Challenge Talk, a weekly audio recording that introduces you to the people and stories behind MS Challenge Walk.

This week, host Ken Gagne speaks with crew person Marianne Dilworth. It took Marianne a few years to "come out" with her diagnosis of MS, but since she did, she has relentlessly supported any and all National MS Society events. "Pocahontas" can be found cheering, blasting music, and handing out hugs and kisses to walkers, bicyclists, motorists, and anyone else who needs support anywhere else on the route. In this podcast, you'll learn her reason for such passionate dedication — and her cause will become your cause, too.

Welcome to MS Challenge Talk, a weekly audio recording that shares the stories and experiences of veterans of those who have walked three days and 50 miles to bring the world closer to a cure for multiple sclerosis, courtesy the National MS Society's MS Challenge Walk. You can subscribe to the show for free in Apple iTunes!

Talking with Todd Krohne

Written by on May 28, 2012 at 9:00 am

Todd KrohneWelcome to MS Challenge Talk, a weekly audio recording that introduces you to the people and stories behind MS Challenge Walk.

This week, host Ken Gagne speaks with Todd Krohne of team Krohne's Buzzards. Todd's involvement with MS Challenge Walk began shortly after he was diagnosed with MS. He then moved from participant to organizer as Director of Development for the Greater New England Chapter of the National MS Society, after years of which he is now again a walker. In this interview, Todd reflects on the changes to the walk and his relationship to it over the years, and the importance the event and its walkers play in the larger mission of the National MS Society.

Welcome to MS Challenge Talk, a weekly audio recording that shares the stories and experiences of veterans of those who have walked three days and 50 miles to bring the world closer to a cure for multiple sclerosis, courtesy the National MS Society's MS Challenge Walk. You can subscribe to the show for free in Apple iTunes!