Why We Walk

Written by and on April 5, 2017 at 8:54 pm

Tara Tonello and mom

Sara Follen and Jenna Wirth of Team Susie Q's

When we first decided to participate in the MS Challenge Walk, we were walking for our mom. As children, we watched our mom suffer from the debilitating side effects of MS. First, the loss of her mobility; then, the use of her arms and hands followed by her speech and her sight.

After her ten-year battle with MS, she lost her life. As children, we felt powerless and hopeless. There was nothing we could do to save our mom. As adults, we made the decision to walk in her honor hoping that it would give us a sense of peace.

The walk has given us so much more! Today, we still walk for our mom but with a sense of hope — hope that there will be a cure. We walk knowing that when we return next year, there will be new research and better medication for people with MS, and that the 50 miles we walked helped to fund that research.

Today, we walk not only for our mom, but also for our MS family. We look forward to coming back each year, and we are truly thankful for the relationships we have built over the last three years as MS Challenge Walkers.

Tara has been participating in MS Challenge Walk since 2010 in honor of her mother, Susan, who was diagnosed with MS in 2003. Her mom is her greatest inspiration, and this is just one way team Sweaty Already, which consists of Tara, her twin sister Shelley and their respective husbands, gives strength to those with MS and their families each year. Tara lives in Halifax, Massachusetts with her husband, Brian, who has been walking alongside her at MS Challenge Walk since 2010.

Hello, Volunteers!

Written by on January 14, 2016 at 1:46 pm

Hello, Challenge Walk MS Crew and Volunteers!

I am excited to introduce myself as your new Volunteer Manager for Challenge Walk MS! I just started work at the Greater New England Chapter for the National MS Society at the end of 2015, and I am ready to get moving!

I have spent the past four years designing and testing medical software and am welcoming a fresh start with a new career change. I interned and volunteered in college with the National MS Society in the Finance department and loved it so much that I was drawn back in! I'm very familiar with the New England area, growing up in Southern New Hampshire, living in Providence, and now just outside of Boston. As you can imagine, I am thrilled to be working with this close-knit community!

I know Challenge seems far away, but let's get revved up and keep the anticipation alive all year 'round! Be on the lookout for future posts and updates from me. I'm beyond excited to get to know everyone. Please feel free to reach out with any questions, concerns, past experiences, or advice moving forward. I would love to hear from you! I can be reached at sarah.chuckran@nmss.org or 781-693-5156.

Sarah is the Volunteer Manager for the Greater New England Chapter of the National MS Society. She is responsible for managing volunteers for all Walk MS events in Massachusetts and New Hampshire, as well as Challenge Walk MS. Sarah grew up in Southern New Hampshire and now lives outside the Boston area. She interned with the Finance department for the MS Society, Greater New England Chapter in college and is excited to be back!

Actor/comic Don Fanelli is walking Challenge Walk MS for his mom

Written by on September 2, 2015 at 3:02 pm

I was around 19 years old when I found out my mother was diagnosed with MS. I remember not really knowing how to react, except to be immediately concerned and start asking questions. What is it? Is there a cure? How will this affect her? What can we do?

I mean, it obviously sucks that she has MS. No one wants to see someone they love be uncomfortable or debilitated in any way. But, I think what my mother does particularly well, is not make it an issue. We never talk about it with any sense of gravity. Of course we ask her how she is feeling but she is not one to make it into something bigger than it needs to be. There are, as we know with MS, good days and bad days. But she rarely will give the disease the attention it craves. She dictates the power the disease has on her, not vice versa.

"She dictates the power the disease has on her, not vice versa."

Don Fanelli on his mom's MS

And that's how she lives. When you meet her you wouldn't really know something was wrong, unless she was feeling numb or going through an episode and even then she would probably diffuse the situation by being brutally honest and making you laugh. And that's what I take away from her. No beating around the bush. Be honest, and usually there is humor to be found in the humanity of it all. I was just so overwhelmed when she finally retired and I found out how many sick days (80) she racked up as a teacher's aide helping emotionally disabled children. I just thought that was some ridiculous work ethic and selflessness and I was just so damn proud. I think it goes back to trying to be in control of the disease, and not letting it be in control of you. By focusing on helping others, it put the attention on them, not you. Therefore my mother could focus on service and not pity, which I believe helped aid in controlling the disease in some way.

"I keep thinking about how I could complete the whole walk in about an hour if could just use a car."

Don Fanelli on walking 50 miles in Challenge Walk MS

It definitely has sunk in that walking 50 miles is pretty crazy. Who thought of this? I demand answers! I keep thinking about how I could complete the whole walk in about an hour if could just use a car. However, I realized that I live my life doing things that really get me out of my comfort zone and challenge me mentally, physically and spiritually. I think this will definitely be uncomfortable at times, but I know focusing on the cause and my mother will be my mental and spiritual fuel…and granola bars and dark chocolate will be my physical fuel. I know there are people with MS that do this walk and it is just overwhelmingly inspiring and flat out badass.

Don Fanelli is a member of the Upright Citizens Brigade Theater in New York City and has a number of TV and movie credits to his name. This will be his first Challenge Walk MS. His team is "Donna Fanelli is a Badass".

Frequently asked questions about walk weekend

Written by on August 24, 2015 at 7:37 pm

Ahhh… the Cape Cod Sea Camps. Our home away from home during Challenge Walk MS weekend.

Friday's route will take us 20-miles from the Hyannis Village Green right up the driveway of the Sea Camps. You will be welcomed by a cheering squad and directed to the check-in tent. At the check-in tent, you will receive your cabin assignment and details on the evening's events.

Cape Cod Sea Camps

Welcome to the Cape Cod Sea Camps!

From there, the rest of the afternoon is yours to enjoy. Lounge in the sun with your team and a beer or a glass of wine. Make new friends under the Big Tent enjoying some snacks before dinner. Visit our incredible Medical Crew in the Medical Tent to soak your feet in an Epsom Salt Bath or to have your blisters tended to. Take a rest in your cabin. Get a massage.

After dinner, enjoy a slideshow of pictures taken by our talented photographers throughout the day, followed by our Evening Program. We strongly recommend attending the Evening Programs, especially on Saturday Night, which will contain our incredible Candlelight Ceremony.

(TIP: It can be dark at night, so you may want to bring a flashlight for getting around the Sea Camps after sundown.)

Below are some frequently asked questions:

Do we sleep in tents?

We do not. We sleep in cabins. The Sea Camps provides communal style sleeping accommodations with bunk beds. Every attempt was made by the NMSS to accommodate any special requests. (TIP: Bring ear-plugs — just in case you have a snoring neighbor.)

Cape Cod Sea Camps cabins

Welcome to your home for the weekend.

How does my luggage get to the Sea Camps?

On Friday morning, you will drop off your luggage at the designated luggage drop-off areas at Kalmus Beach or at the Hyannis Village Green. While on the route, your luggage will be transported to the Sea Camps and sorted by walker number. When you arrive at the Sea Camps, you will collect your bag and carry it to your cabin. For your convenience – and that of the crew members – please keep your luggage to under 40 lbs. If you need help carrying your luggage, find a crew member and they will be happy to help.

What are the bathroom / shower facilities like?

There are shared bathroom / shower houses located strategically around the Sea Camps. In addition, some of the cabins are equipped with bathrooms and showers. If there aren't any located in your cabin, there will be a bath house close by. (TIP: Bring flip-flops for the showers.)

Do I need to bring my own linens?

No, but you may choose to. The Sea Camps provides sheets, blankets, and pillows. They also provide towels – very small towels. Many participants bring a towel from home, and are glad they did.

Is there electricity?

Yes, all of the cabins have electricity. Don't forget your cell phone chargers!

Where do we eat?

A delicious breakfast, lunch (for crew and other participants at the Sea Camps mid-day), and dinner will be served at the Sea Camps Dining Hall. This is a wonderful opportunity to spend time with the new friends you will meet on the route. Make sure to note the start/end times for each meal which will be posted outside the Dining Hall — along with each day's menu.

Cape Cod Sea Camps dining

Cape Cod Sea Camps dining — mmm mmm good!

How do I get my luggage at the end of the weekend?

On Sunday morning, before you embark on the final 10-miles, you will drop off your luggage at a designated spot at the Sea Camps. While on the route, your luggage will travel back to Hyannis Village Green, for you to collect at the end of the Closing Ceremonies.

What if I have a question that was not answered here?

Don't hesitate to reach out to the Challenge Walk Staff at the National MS Society, Greater New England Chapter.

Thank you so much for your commitment to this event and to creating a World Free of MS.

See you bright and early in a few weeks at the Hyannis Village Green!

Amy has been participating in the MS Challenge Walk since 2002, in honor of her father, who was diagnosed the year before.  In 2007, she joined the Steering Committee. She feels blessed to be accompanied by such an amazing group of people in this fight against MS.  Amy lives in Lowell, Massachusetts with her husband, son, and daughter.

Selfie and notes to self

Written by on August 19, 2015 at 7:47 am

There's less than a month left until Challenge Walk MS: Cape Cod begins. Time to get it in gear! And no shortage of gear needed!

My "selfie" and "notes to self":

  • Break in my new sneaks ASAP
  • schedule all my training walk routes
  • review the downloadable CW "Travel and Information Guide"
  • send pledge reminders
  • update progress on my personal CW page
  • send thank yous from my Participant Center
  • keep walking, rain or shine
  • update my Facebook page with progress
  • dig out the CW "change of clothes bag" and don't over-pack again — well, sort of
  • replenish my survival kit: blister kit, muscle rub, OTCs, bug repellent, shark repellent??, sunscreen, caffeine, and of course chocolate
  • send pledge reminders — again
  • check in on final team logistics
  • check my pledge totals online, at least hourly
  • schedule post walk spa session
  • begin sleep walking — if necessary
  • plead for pledges — if necessary

Daily reminder: breathe deeply but keep moving — no sweat!

Michelle Dickson selfie

Michelle Dickson selfie

See you at the start line!

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.

Society president is walking & talking

Written by on August 6, 2015 at 11:44 am

National Multiple Sclerosis Society President and CEO Cindy Zagieboylo will be participating in Challenge Walk MS Cape Cod this September. She shares her thoughts about what it means to her and also a training selfie:

I'm excited about the upcoming Challenge Walk MS on Cape Cod! The Challenge Walk MS is a wonderful metaphor for what it takes to be resilient: Setting goals (50 miles and raising funds), engaging others (some join your team and some support with financial contributions), receiving support (encouragement on the route, rest stops), and providing support (encouraging others makes us stronger). Much of what I have learned about resiliency has been from connecting with people affected by multiple sclerosis.

I plan to make new connections during the Challenge Walk MS and deepen the connections I already have. My team is called "50 Miles – All Smiles". Let's walk together!

Cindy Zagieboylo

Welcome to the team, Cindy Zagieboylo!

Cyndi began her career with the NMSS in 1985 at the Massachusetts chapter as a director of support services. She now serves as president and CEO of the national organization.

The guilt made her do it

Written by on July 29, 2015 at 10:04 am

Beth Keough of Franklin, Massachusetts, didn't set out to walk fifty miles on Cape Cod last fall because she needed the exercise, wanted the blisters, or even because she was raising money to find a cure for a disease she lives with every day — no, she did it out of guilt.

"I was tired of the guilt trips," she laughed.

The guilt trips were from her brother Tom Keough of Milford. Tom had been taking part in Challenge Walk MS on Cape Cod for five years and wanted his sister to join him. Challenge Walk MS is a three-day, 50-mile walk on Cape Cod that raises money for the National Multiple Sclerosis Society.

Beth was diagnosed with MS in 2006.

"I had difficulty walking," she remembered. "I thought it was just a pinched nerve."

Not long after Beth's diagnosis, Tom began participating in the 50-mile walk. Each year he would invite his sister to join him. Her schedule didn't allow her to do so — until last year.

"I always wanted to do it," said Beth. "I had gone to the Saturday night (candlelight) program, and it was such an inspiring thing to see."

Last year, it worked out she could train for and participate in Challenge.

"I decided I would sign up for it — and I was very glad I did."

Not that it was easy: just finding the time to do the long training walks was challenging to say the least.

"It was very difficult, but I did what I could," said Beth. "I definitely wish I had trained more. I did 33 miles (of the 50); it was definitely hard but I pushed through and did what I could."

For big brother Tom, it was great having his sister walking with him.

"It was fun having her out there, trading sarcastic comments and barbs, with her always making sure to keep me humble," he laughed. "I was also very proud at the way she pushed herself past pain and mental hurdles to go farther than she even thought she could. After some stumbles over previous years, it was awesome to see that the changes in treatment were working for her and helping her physically. It gave me a boost, knowing that they are making progress and it's a battle worth fighting. Today, we can walk together for everyone fighting the disease.

The guilt for Beth is gone — replaced by something else.

"A different emotion for me — pride."

Eileen is a Media Relations Specialist for the National Multiple Sclerosis Society, Greater New England Chapter.

Brother walks for sister with MS

Written by on July 27, 2015 at 10:03 am

When Tom Keough's sister Beth was diagnosed with multiple sclerosis in 2006, he admits, he felt helpless and initially handled it poorly.

In an effort to do something positive, the Milford resident signed up for a one-day Walk MS in Worcester. He was immediately inspired by all the people he met, walking and working to find a cure for the disease affecting his sister.

Then Tom heard from a friend about the Challenge Walk MS on Cape Cod, a three-day, 50-mile journey to end MS forever. He immediately joined the friend's team, Bonnie's Believers.

"I jumped on board and started looking at different ways I could fundraise for the cause," said Tom. "Meeting so many amazing people along the way has only fueled my passion, and I walk for them as much as for Beth now."

Last year was Tom's sixth Challenge Walk MS, and the first time his sister Beth could join him.

"I was really excited to have her there to experience it as a walker and to meet others who understand what she is going through," said Tom. "Since I started walking, our family has always made Challenge Walk weekend an important time of year and it was cool that she could see it from start to finish. "

Beth and Tom will walk together again in this year's walk. Tom has high hopes for the weekend and beyond.

"My hope is to meet new friends to inspire us and reconnect with old friends who are stronger than they were before, whose treatments have been successful in controlling the disease's effects," he said.

"For my baby sister, I hope that she will continue to push her limits and know that her brother has her back, no matter what she wants to do in life. I hope that we can one day celebrate a cure and know that we were a part of making that happen."

Eileen is a Media Relations Specialist for the National Multiple Sclerosis Society, Greater New England Chapter.