Why we walk

The following stories of Challenge Walk participants -- walkers, crew members and volunteers -- have been collected over the years. If you’d like to share your story, please email Yarissa.Reyes@nmss.org.
 

The first year of the Challenge Walk was the same year I was diagnosed, so I volunteered for all three days. I drove the whole way from my home in South Jersey to Camp Green Lane on all three days and home again. I was so confused, tired and fuzzy. I had no concept of what Crew meant, did not realize I could have stayed at camp, almost wrecked on the way home the second day and received a ticket for driving erratically on the third day on the Commodore Barry Bridge. But I volunteered all three days, and I still had no idea what the Challenge Walk was, just that I was looking for a cure, and sometime, somewhere at one of these MS events I was going to find one.

I continued to volunteer at the spring Walk events, the Bike MS and became a Crew member with some staff help the next year. And I continued to volunteer at every event possible and Crew for the Challenge Walk every year. I was a member of the 2008 Leadership class. Then in 2010 when Joe Frick, CEO of IBC, was chosen for the HOPE award, I went to the Dinner of Champions with him, and we walked together in the Challenge Walk on Charleen’s Dream Team, with my husband, Joe’s wife Amy and a few of our friends. I walked 22.5 miles in 2010. I was very proud. 

In 2011, our granddaughter Cassidy also joined the team and a couple more folks, and I was only able to walk 7.5 miles, but I helped (staff member) Megan with SAG. Now this year I am training again and I hope to walk, but it really doesn’t matter, because Charleen’s Dream Team has recruited a few more team members, and we are training and fundraising. We will be out there in force, and whether I am walking or helping with SAG, we will be scouring the entire 30 mile of that course looking for that cure!

That is my story in a nutshell, but most important to note: I have MS, MS does not have me!

~Charleen Hinton

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I am typing this note because my handwriting is shaky right now. I am an MS patient who is currently coming out of an exacerbation (I think they are different for each one of us). I end up bedridden, unable to do much for myself. It gets hard to breathe and concentrate. I have bouts where I am wide awake and want to get things done but can’t get out of bed.  And then there are times when I just want to disappear into the mattress and never come out (not from depression, but fatigue).

This time I started steroid treatment early; it’s all about knowing your body, I guess. I want you to know that I walked the very first year Challenge Walk was here in Philadelphia. I walked with my husband Steve and two daughters, Connie and Kristen.

Last year a friend of mine, Wendy, walked for me. Shortly afterward she was diagnosed with MS herself. I remember receiving a call from her — she was 1 mile short of completing the first day and was exhausted; she apologized to me and sounded very upset that she couldn’t finish the first day (she stuck with it and completed the next two days).

All I could say was how proud and honored I was that she even tried. In my opinion, she is a hero and a champion . . . not unlike yourself. To take time out of your life to share a part of yourself to care about others is a wonderful thing.

I want you to know that the National MS Society does valuable work. They keep us going. I will do everything I can to be at the finish line at Campbell’s Field when you return.

Thank you so very much for doing this walk, not only am I thanking you, but my family thanks you.
May God richly bless your life.

~Teresa Scardino, 2005

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For those of you who do not have MS or know someone with MS personally, it may be difficult to understand just what having MS can do and how it can change someone’s life. For me, MS is the monster in the closet. It is an ill-fitting overcoat I cannot take off. I pull and tug and squirm inside it, overheated and uncomfortable, never quite able to throw it off completely.

It’s easy sometimes to look in the rearview mirror and remember what we were, how we were and what we might have left behind. I do it. While I am not happy about the detour of my life known as MS, I can be happy while traveling along this road. Happiness is a choice and I choose to be happy. I can remember there are always sights to see along this road, rest stops when I need them and others traveling along this road with me. We are all headed in the same direction, at different speeds, in different vehicles and with different needs.

But, we are moving. We are growing and we are alive. We live. We breathe. We love. We learn. MS is only a road we travel, it is not who we are. MS may mean fighting to live the life you've been given, but that life is worth the fight because it’s the only one we’ve got. And, one day soon, I’ll see my MS in the rearview mirror and wave goodbye.

Most importantly, what I want you to know is that this weekend, every mile you walk, you walk for me. Every dollar you raise, you raise for me. Every one of your Sponsors sponsors me. From the air-conditioners in my windows to the scholarship my daughter received to attend a special art program, from the hundreds of client programs to better my life to the friendly voice every time I call, you have done all this for me, along with 11,000 other people and their families. Your walk lasts two days. Your efforts take all of us through the following year… with MS along for the ride.

This is the first year my family has been involved in the Challenge Walk. My 11-year-old daughter, Ellie, signed up early and began to try and form a team. Her first teammate was my husband, Marc. I’ve never been as proud of them as I am today. As I am of everyone who walked, served lunch, handed out water, cheered from the sidelines and did their part for me, today.

Together, we are slayers of the monster in the closet. One day there will be a cure and each one of you will have made that possible. Each one of you will have changed the lives of people just like me. Each one of you will have the right to raise your fist in the air and say with pride, “I did that!”

Tomorrow you will get off your aching feet, sweaty, tired and sore, and Monday you will resume your lives. Remember as you do that your walk has ended but mine keeps on going. The difference is now I have partners like you to help me slay the monster.

~Barb Lieberman, 2006

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Living with MS has been quite the learning experience. I have not only learned a lot about the disease, but I have also learned a lot about myself. Having MS has taught me to live for today and not worry about what may or may not happen in the future.

The challenges MS throws at each person are different. I am the type of person who likes to tackle things head-on, whether it means learning more about the effects or walking 30 miles. MS also has taken hold of my sister. She has not been as fortunate as I have been physically, and she has driven me even more to raise money and awareness for multiple sclerosis.

My involvement with the National MS Society has been quite the blessing and one I am very grateful for. I have met many people living with the disease, family members of those with MS or people who just want to help out. They all have had an impact on my life and I have made many great friends that I never would have had if not for MS.

This is my fifth year of being part of the Challenge Walk as a committee member, crew member or walker. I look forward to planning the walk, as well as to the walk weekend, when I can see old friends from past walks and meet new friends among our rookie walkers.

When I walk, my physical experience has been quite good. Yes, my feet hurt. Yes, my hips hurt. Yes, I get tired, but I keep walking. When I look around and see others who are feeling the same pain as me, it puts it all in perspective. 

I have found being part of the crew to be just as fulfilling as being a walker. There have been a couple of years that I was quite a bit more tired than when I actually walked. So please be sure to thank all your volunteers and crew members every chance you get, because without them, we would not have a successful walk.

It is my hope that people take three things away from their experience of walking in the MS Challenge Walk. The most important thing is that anything is possible just as long as you give it your best try. Second, be sure to make some great connections with people along the walk and talk to others outside of your group. And finally, when you return to your loved ones and friends, tell them how great your experience was and recruit new people to walk next year.

I have been recruiting new walkers since Day One of my involvement with the Challenge Walk. My enthusiasm about how great my experience has been just bubbles over when I talk about the walk. I let people know how great you feel during the walk weekend and most importantly, the great people you will meet along their journey.

The feeling I get during the walk weekend is an awesome feeling, a natural high. It’s like walking on air!

~ 10-year Challenge Walk Veteran Allison Coia, 2007

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In October 2003, I signed up with my niece Denise to be a crewmember for this new walk for MS. I didn’t think I could walk the Challenge Walk MS, but I knew I could cheer the walkers on and tend to their needs.

That first year, we worked so tirelessly, Denise and me. I was stationed at home plate with Zoe Koplowitz, as she handed the walkers their medals. People with MS wore red shirts, including crewmembers who had MS.

I can still recall one guy seeing me in my red shirt, with tears running down his face. He was so thankful for all I did for him that weekend. I told him I was so thankful he walked for this cause.
We had the gift of meeting and serving such wonderful, genuine people that weekend in 2003. It will be etched in our hearts forever.

In 2004, we became Challenge Walkers! The MSfits were formed. My first year walking was such an accomplishment! After walking the first day, we were the last bus in to the camp. I had blood blisters, and blisters on blisters. Dr. P and his crew were the best! They stayed and worked on my feet, giving me the care I needed to walk the second day. It was amazing! I got up and walked, sore and in pain, but full of determination. The third day it took over an hour to put my shoes on, but I did it! I did every mile!

Our team has grown since then. We have been joined by friends, family, and even former strangers. We now have three people with MS on our team.

We are a team and we worked our fundraising as a team. It is so exciting to watch the totals add online. You begin, hoping that you can make it to each walker and crewmember’s minimum. Then each year, close to the end, it pulls together and exceeds the expectations. This year we are a top-5 fundraising team.

It is an honor to be here again with all these sincere, caring people. All the efforts, all the training, makes you feel that you have accomplished something great, and made a real mark against a disease.

Whether you are a walker, a crewmember, a volunteer, or a staff member, I thank you with all my heart for being you.

YOU make a difference.

~Kim Bock, 2008

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Judy Hasday, known to many as “Judy Crew,” has become a familiar face at Challenge Walk MS and other chapter fundraising events over the past five years. From the first step to the last, she documents our events and participants so the great memories can live on.

How she got involved: Five years ago, a friend invited Hasday to join her at Challenge Walk MS. Instead, she volunteered as the event photographer. Challenge Walk MS 2009 will mark her 20th fundraising event for the Society. In the process, she has raised more than $5,000 for people living with MS, primarily through Challenge Walk.

Her MS connection: None at the beginning. Since then, she has gotten to know many volunteers, participants and staff members at the events. “It’s personal now because I know and have become connected to people,” she said. “It’s a whole community.”

How she got her nickname: The first time Hasday volunteered at Challenge Walk, Volunteer Manager Kathie Cronk scrawled “Judy” and “Crew” on a plastic sleeve as her credential. “People assumed that was my name, not that I was Judy, a person crewing for the weekend,” she said.

Meaningful moment: At the end of Hasday’s first Challenge Walk, she noticed walkers putting on red T-shirts and figured they were VIP fundraisers. Then someone explained they were living with MS. “It never occurred to me that people with MS would walk in Challenge Walk,” she said. “It was really stunning.”

Her inspiration: Challenge Walker Beth Hagan. “She could ride a scooter if she chose to and still participate, but she doesn’t do that,” Hasday said. “She’s just amazing, what she does.”

Why she keeps coming back: “It has been a great experience with some really cool people,” she said. “I’ve been able to contribute something to them, and not just that I’m standing there with a camera. That’s what brings me back every year.”

Judy Hasday, 2009

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Why We Fight MS
It’s that time of year again! We are getting ready to take steps together, as a family, in the fight against multiple sclerosis by joining the 7th Annual MS Challenge Walk on October 17th and 18th, This marks a very special year for some of us! Since 2003 most of our family has walked over 200 miles fighting MS. During this year’s walk, Renie, Courtney, and John Jr. will hit a milestone of 250 miles walked fighting the disease that prevents so many from taking even the smallest steps.

This year has come will lots of joy and hopeful times as well as some disappointment and renewed strength. John began treatment with a chemotherapy drug called Novantrone in July of 2008. By November John was walking without a cane, had improved energy, and enjoyed spending time with the light of his life his grandson Liam. Unfortunately John developed some heart damage from this drug, a known risk and side effect. Although his heart is stable for now, doctors have decided the risks of the medication are too great and John was unable to continue treatment. Our excitement and hope were quickly crushed and left us wondering, what’s next? Unfortunately his weakness and poor balance has returned, but our optimism and perseverance continues! There is currently a drug trial underway that has shown lots of promise to help improve walking and balance in MS patients. We are hopeful that the FDA approves this drug for fast tracking and it will be available in the next year.

Your continued support year after year is what helps keep this type of research going. You help provide hope not only our family, but for the millions of people whose lives are touch by the devastating effects of MS.

Through your generous support in the past, we have raised over $85,000 for the National MS Society. This year we hope to continue our quest and once again achieve our yearly goal of $15,000. We are asking for your continued support by making a tax-deductible donation.

Thank you in advance for your generous support!

John, Renie, Lena, John Jr., & Jackie Gowder,
Courtney, Greg & Liam Vincent

~ Curesading Myelinators, 2010

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What Challenge Walk Means to Me

I believe that I can make a difference in the fight to find a cure for MS. I think we are getting closer every day to finding a cure, and I think and hope one will be found in my life time, but if not, definitely in my daughters’ lifetime.
 
I have seen first-hand what having MS can mean. I’ve seen how MS can cause embarrassment as you suddenly lose control of your bladder or fall for no apparent reason.
 
I have also seen the camaraderie that people and their families share with others who live with the disease and the hope they have for a better life once we find a cure. I have experienced the friendship and warmth from dozens of friends who not only donate to the Society in my family’s name, but also go out of their way to be supportive.

Why I’m walking

I am walking for our team captain Pam, who I have known since before she had MS.
 
I am walking for Kevin who works at the place that services my cars. Although he was diagnosed four years ago, he always has a smile on his face and is upbeat.
 
I am walking for Annette Funicello, who doesn’t know I exist but was my first true love. 
 
I am walking for Pat, a co-worker’s sister who just found out that she has MS and is having trouble accepting it. 
 
I am walking for Lydian, my sister-in-law, who has had MS for several years but still works extremely hard and has helped me take care of my wife. 
 
I am walking to remember my close friend Fenton Batezell who was diagnosed with progressive MS in 1989 and went completely blind two years later. He died in 1996.
 
Most importantly, I’m walking for my wife Dorree who was diagnosed with MS shortly after my daughter Alex was born in 1984. At that time, Dorree was dragging a leg trying to walk. We used to play cards, but she could no longer hold the cards in her hands. We had no idea what was wrong with her.
 
Doctors gave her a spinal tap and diagnosed her with MS. Back then, Dorree had relapsing-remitting MS. Though she had many exacerbations, she would always eventually get better. I gave her a weekly injection of Avonex, and she remained fairly stable.
 
Around 2001, I began giving her daily injections of Copaxone. Dorree continued to get worse, and after 20 years, she had entered second stage progressive MS. Dorree began to lose her balance and now walks with a cane. She also developed Alzheimer’s symptoms, lost some of her short term memory and started having problems with her cognitive thinking.
 
Throughout all these years, Dorree has been an inspiration to all of our family as she continues to have a positive attitude and remains fun and full of life. I have put up a sign for her to see every day that reads “All I have to do is be happy.” 
 
Whatever happens to Dorree, she will continue to enjoy life. And we will continue to enjoy life with Dorree even if at some point she doesn’t know who we are.

I will carry the names of all of these people and think about them as I do the 30-mile walk.

My Goal

Last year I raised $7,500 walking with my daughter Alex. Both my daughters and I hope to raise $10,000 between us this year. I am not sure we will find a cure in time to help my wife, but my two daughters are the most important people in my life. I want to find a cure so they and their children will never hear the words “you have MS.”

~David Wickman, 2010

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WALKING WITH PURPOSE
WHEN MICHAEL VIOLA, 46, of Philadelphia took up the challenge to walk 50 miles in the first Challenge Walk MS, he did it with a purpose.

“I was diagnosed not long before the first walk,” said Viola. “I wanted to be able to prove to myself that I can do it. Since I started, there has been no turning back.”

Viola was diagnosed with relapsing-remitting MS in 2001. Born and raised in Brooklyn, N.Y., he relied on walking as his usual means of transportation.

“I have always been a walker,” says Viola. Now taking part in his ninth Challenge Walk, the veteran walker has some tips for first timers.

“Train, train, train! And have fun during the weekend.”

Viola is walking with Team Pizza 22. So far he’s raised over $2,000 surpassing his goal of $1,500.

“I did most of my fundraising by sending out email messages to everyone one for whom I have an email address and through Facebook,” he said. “I also ask people for the names of people they know who have MS. I walk for those people as well. This helps personalize the event for people – knowing that I am walking for someone that they know even if I do not know the person.”

When asked what his favorite part about Challenge Walk, Viola says he has several. “In no particular order: the notes from our loved ones, the hard work of the podiatry students and the massages.”

“The Candlelight Ceremony is always special. Seeing the number of lights increase as more and more candles are lit is really inspiring and moving,” he says.

Viola, who’s been residing in Philadelphia for the last 24 years, says through this event he has met so many people over the years and formed lasting friendships. “The list of loved ones with MS would be too long to catalog.”

~Michael Viola, 2011

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A Long Day’s Journey
A CHESAPEAKE, VA. resident, Stan Hoskin, 58, is a long way from home. The retired Army colonel and elementary school counselor walked his first 20 miles yesterday as an individual walker.

“I thought about doing Challenge Walk this past summer,” Hoskin says. “Since the Hampton Rhodes Walk was cancelled, I decided to do this one.”

Hoskin’s inspiration for participating in Challenge Walk for the first time is his wife Janeann, who was diagnosed with primary-progressive MS almost a year ago.

“The diagnosis was bittersweet,” Hoskin said. “On the one hand it was good to know what she had but on the other hand – it was MS.”

Hoskin, also 58, had apparent stroke-like symptoms. Dealing with cognitive issues, problems walking and writing difficulties, the Hoskins needed answers. After being in a nursing home for three weeks following a seven-day hospitalization, Hoskin was seen by another doctor who finally gave her the diagnosis in December 2010.

“I didn’t know many people with MS before her diagnosis,” Hoskin said. “Once I began telling people of my wife’s diagnosis, we learned about others whom we knew for a long time and had no idea they too had MS.”

Although yesterday was a long day for him, Hoskin said the long trek was well worth it. “I’m here to support my wife plus I get to spend time with my family.”

The Hoskin’s older daughter, Laurie, 34, and her husband Mike Kramer, 36, live here in Delaware. Younger daughter Celissa, 21, of Chesapeake, Va. also came along for the experience.

~Stan Hoskin, 2011

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From a staff member:
The most fun year I can remember was either 2006 or 2007. I was the staff person at the waterfall rest stop on Saturday (that was my normal stop) and we had THE BEST CREW there. They were with the Old Soles, and they were awesome. The rest stop was decorated to the theme; it was so festive and they brought music and danced the entire time. They were a great group of volunteers that made a long day for both staff and walkers fun, and gave the walkers the last push they needed on their final trek to the pre-finish.

~Nicole Lewis, Greater Delaware Valley Chapter staff member

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After watching my husband of 38 years fight every day of the last 20 years with his MS, and seeing that he was losing the battle, I felt I needed to help keep up the fight or do something. I had recently stopped smoking, knowing all too well that it would not be long and our daughter would only have one parent. And I wanted to make sure I tried to stay healthy so I joined the gym in September of 2012. By January 2011 I could see things going in a direction I could not stop with Ron and his MS, so I needed something to focus on beside the inevitable and possibly change something maybe not for Ron but maybe for someone else.

So my goal was to walk the Challenge Walk MS in October 2011. I signed up and started to campaign for donations through Facebook and was completely amazed by the support I received from friends and family. Not only did I meet my goal, I surpassed it. You know living with the constant of an illness, you somehow lose grip of the good things, especially near the end. You forget how much people really do care, and boy did they come through! 

I did participate and complete the walk. But along that path I met many incredible people and I became someone I had stuffed in my back pocket for a long time. I realized I had to start living my life because Ron was going to leave me but that I was going to live it with a purpose, and that was to keep the promise I made to Ron -- to walk for MS as long as I can walk.

I met three awesome friends on that walk: Christine, Alie and Katelyn. We shared stories, time and smiles, and they showed me the ropes as it was my first walk. For Christine it was her seventh year walking for a friend with MS, and Alie and Kate were walking for Alie's mom who has MS. We have kept in touch and Kate and Alie even came down to attend our beef and beer, which was so appropriate as Kate and Alie were my inspiration for the event. They were pretty funny explaining how they put their beef and beer together last year, making all the money they need for the walk in a about a month. I on the other hand spent nine months getting the money I needed, so I kept that idea in the back of my mind.

But mostly what changed me was the letter hanging in the barn at the end of the first day from our daughter explaining how proud she was of me and how much Ron appreciated everything I was doing and thanking me for being there for him. And it quoted Mark Twain, "Twenty years from now you will be more disappointed by the things you don't do than by the ones you did. So throw off the bowlines, sail away from the safe harbor, catch the trade winds in your sail. Explore, dream and discover."

I have not been in a safe harbor since that day! My hope is that everyone sails from their safe harbor, because living life without regrets is really awesome. It makes you feel alive, and there are enough disappointments in life -- don't make yourself one of them.

After coming back from the walk, I was so inspired by what I saw and how good I felt that I wanted to do more. So I explored all the MS activities in the area and started discussing the Bike ride, MuckRuckus and putting together a beef and beer benefit. Along the way I think I may have inspired a friend at work, and she joined in with me, eager to participate in all activities and helping me put together the beef and beer just because she wanted to do something for others. Her willingness to jump right in inspired me to keep pushing past my comfort zone.

Well I'm happy to say we had our benefit in April at Shamrock's Cafe in Wildwood and we had a great time and were very successful. We raised enough money for the walk for two of us, City to Shore Ride for two and made partial payment for the MuckRuckus team which consisted of 15 people. We called our team "The Cape Maniacs" and we are taking on an extreme MS challenge by participating in as many of these activities as we can. I plan on participating in all three.

By the time you are reading this, we will have completed the first leg of our challenge, the MuckRuckus MS Philly. The team is composed on gym members and friends who are just everyday good people who want to make a difference in someone else's life. I am sure this will be a pretty funny story on its own, provided we all survive. I am a little nervous. But this is just to show that one person like me reaching out and getting involved and out of my comfort zone changed things and made things happen -- something I would have never done if it were not for the Challenge Walk and what I learned about me and the family of those affected by MS.

And although I know now I was running away from what I could not change, that walk changed me. I lost Ron this past February and my biggest regret is that he is not here. I miss being able ot share our success in fighting for him and others against MS. But I am sure he is watching. He certainly sends me many little signs his is by my side. I am looking forward to him joining me this October on my walk. And as the subject of this note says, "I don't have MS, but it changed my life." Well it certainly did. It took away the person I love most, but it gave me a real appreciation for life and I am going to live it to my fullest, always keeping Ron with me and fighting for the cure. The total of all our activities will bring in a minimum of $5,300. You know, it took a little bit of effort, but I gained so much.

~Diane Hermann