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The Connecticut-Rhode Island Chapter works to improve the quality of life for people affected by MS in Connecticut and Rhode Island raise funds for critical MS research. Join the movement toward a world free of MS.

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A Little Magic Never Hurts

January 30, 2015

WATERFORD, Conn. – When Old Lyme resident Edyse Smith decided to support a friend in April of 1996, she had no idea of the irony there could be in participating in a charity walk event for multiple sclerosis. And for months, she wouldn’t. Not until, that is, her daughter was diagnosed with the incurable disease.

“In 1996 I participated in Walk MS for a friend in support of her battle with multiple sclerosis,” Smith stated simply. “It was April then, and my daughter, Jody, was diagnosed with MS in November of that year.”

Jody Smith, of Waterford, was just 21 at the time of her diagnosis.

“My entire leg went numb- from the thigh down for a day or two,” shared Jody, now a mother of two. “I first thought I slept on it wrong, so I didn’t worry too much. But after a day or two when I still had the numbness, I thought I might have pinched a nerve, so I went to the ER. They first misdiagnosed me with Lyme Disease before my primary care doctor sent me for more tests when my antibiotics weren’t making me feel any better.”

After an MRI and a spinal tap both showed signs of multiple sclerosis, a neurologist confirmed that Jody was living with MS.

“At first, I was in denial, and stayed that way for the first few years,” said Jody. “I remember going to a support group meeting and leaving in tears I was so overwhelmed. I didn’t feel like I belonged there – I didn’t feel like I had the same disease as the other people at the meeting. I didn’t feel like I was sick.”

Mother Edyse, too, admitted that at first, she felt anger more than anything else. But, a strong woman who wanted to fight for her daughter, the next year Edyse Smith set out on a walk not just as a supporter for her friend – now she was spearheading her own team in support of Jody.

“In 1997 we stepped out for the first year as the Mickey Mouse Milers – even at the age of 21, Jody was in love with that mouse,” Edyse Smith said, also sharing that even in 2013 Jody was still filled with tears of joy when she got to meet the famous mouse on his home turf in Florida. “We wanted this team to be all about supporting Jody so of course we let her pick a name. It is fitting that the name was inspired by something as magical as a Disney character, because our team has done some pretty remarkable things.”

What started as a walk grew into a family tradition, and over the past 18 years, the Mickey Mouse Milers team has raised over $100,000 to support MS research in an effort to find a cure. The family’s dedication is a testament to their determination to fundraise to find a cure for Jody Smith and all who are living with MS.

“It’s really neat to look at how much Jody’s two girls have grown,  knowing that they’ve been on the walk route since they were still in Jody’s belly,” said Edyse. “It’s just another reminder of how committed our team is.”

The team consists of Jody Smith, her mother Edyse Smith and father Bob Smith, sister Robin Smith, and her two children Julia and Rebecca. Jody’s aunt Pat Boyle, cousin Lisa Campbell, and Campbell’s two daughters Jocelyn and Chloe complete the team’s core. As each year passes, the team grows. Over the years, Jody’s best friend has also been a part of the team. They have already registered to walk at Camp Harkness in Waterford on Saturday, April 18.

“After some time, I accepted that I had MS, but refused to let it have me,” Jody said. “I won’t let it stop me from living my life. I know that I should probably take things slower, but I’m stubborn and want to keep pushing.”

Symptoms of multiple sclerosis can range from numbness in the extremities, to loss of vision and, in severe cases, complete paralysis. The progression, severity and specific symptoms related to MS in any one person cannot be predicted, but advances in research and treatments are providing hope to those affected by the disease. For Jody Smith, she has difficulty standing for long periods of time and walking. She gave up her home daycare because she didn’t have the energy to run it well and opted for a part-time job instead.

“Many people don’t understand MS,” said Edyse. “They look at Jody and say, she’s fine, but only those who suffer really know. In recent years, I know it has gotten worse, because she can no longer walk the entire walk with us. I push her in a wheel chair. But I can see that she’s determined to keep getting out there year after year.”

As a result, the Mickey Mouse Milers team has been a top family team for over a decade. 

For the second time, Camp Harkness will serve as the starting point for Walk MS, presented by Travelers, on Sunday, April 19. Check in opens at 9 a.m. at Harkness Hall and walkers will step out at 10 a.m.

The 2014 Walk MS attracted 10,500 participants and raised $1.4 million, which they hope to duplicate this year.

Nearly 800 walkers took to the pavement in Waterford last year. Together, they raised more than $101,000. This year, the Waterford planning committee hopes to raise $105,000.

“Every year I look forward to our whole team getting together for Walk MS,” said Jody. “It’s great to see all of the teams stepping out to support the cause, both new teams and ones I recognize from previous years. Snow, rain, heat, cold – we’ve walked through it all.”

The 2015 Walk MS, presented by Travelers, will be held Saturday, April 18 in Enfield, Fairfield and Madison, and Sunday, April 19, in Cheshire, Waterford and West Hartford. Participants can also join Walk MS on Saturday, April 25, in East Hartford and Sunday, April 26, in Litchfield, Simsbury, Stamford and West Haven.

At this year’s event, participants will enjoy lunch provided by Coca Cola and Subway. The Waterford site will also feature a Mission Station- a new and exciting way for walkers to get involved, get information, earn rewards and gather some team spirit for the walk.

“I have been totally committed to this cause since Jody’s diagnosis, I truly believe there will one day be a cure,” shares Edyse Smith. “There have been a lot of advances and we have hope with the new medications. But until there is a cure, I plan on walking.”

Funds raised by the National Multiple Sclerosis Society, Connecticut Chapter, through events, such as Walk MS, presented by Travelers, ensure ongoing scientific research to find better treatments and a cure, and provide vital programs and services offered by the chapter.

Walk MS community partners include News 8, WUVN/WHTX Univision and WUTH Telefutura and Connoisseur Media’s STAR 99.9, WPLR 99.1, WDRC 102.9, The Fox 95.9, as well as I Heart Media Connecticut’s The River 105.9, WCTY 97.7, La Puertorriqueñisima 1120 AM and 99Dollar DJ & Entertainment Service.

There is no fee to register for Walk MS. However, participants are encouraged to form teams and raise funds.

To learn more about the 2015 Walk MS, presented by Travelers, or to register, please visit www.ctfightsMS.org.

About the Connecticut-Rhode Island Chapter of the National Multiple Sclerosis (MS) Society

The Connecticut Chapter strives to provide knowledge and assistance to help people with MS and their families maintain the highest possible quality of life. These goals are achieved through vital national and local programs.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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