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March 25, 2015

Life Changes

By Tampa Bay Parenting

Sometimes it takes a life changing event to spur us into action or push us down a path we never anticipated.  In my case it was the death of a close friend. Michele Green was a life force to be reckoned with. Funny, feisty and smart, Michele was a young mother of two when she started experiencing the symptoms of Multiple Sclerosis. Her case was particularly aggressive. During those final visits with her in a nursing facility I asked myself, how did she get here?  Michele lost her battle with MS in July 2003.

Every hour of every day someone new is diagnosed with multiple sclerosis.  MS is a chronic, often disabling illness that attacks the central nervous system.  It is a disease that can erode a person’s abilities and hopes, steal their livelihood and tear into the fabric of families.

Like so many others I was not overly familiar with multiple sclerosis and the damage it inflicts on those it strikes. The week Michele died I cold called on the National Multiple Sclerosis Society Mid Florida Chapter and offered to volunteer in whatever capacity they could use me.

Over the last 11 years I’ve witnessed the hard work and dedication of the NMSS staff and volunteers. They push tirelessly toward the goal of one day living in a world where MS is curable. Nearly half a million people in the U.S. are living with MS and worldwide, another 200 cases are being diagnosed on a weekly basis. Like my friend Michele, many of these patients are moms, daughters, friends who begin to lose their vision, speech, ability to walk, and numerous other small motor functions. Here in the U.S., and here at home in Tampa Bay we are lucky to have the Multiple Sclerosis chapter to help families on that frightening journey. They don’t have to go it alone.

I’ve encountered so many inspirational people over the years but one family’s story stands out.  Megan Felder has lived with the debilitating effects of MS for nearly two decades. During a recent conversation Megan’s mother Ande shared her perspective. “Living with a child that has MS is a constant emotional reminder of how fragile life can be. One minute she is a 19 college sophomore with her whole life ahead of her, and the next moment she can’t walk, can’t see correctly, can’t hold a fork and feed herself, can’t shower and basically needs your help for everything. New therapies and an amazing doctor gave her back her life and she has been great since then. But the worry is always there…will she have another exacerbation? Will she recover as well this time?”

Megan’s devastating diagnosis at 19 prompted Ande and her husband Ben to do so much more than seek out the best medical treatments available. Over a decade ago they launched MaSquerade, an annual fundraiser to raise money for the National Multiple Sclerosis Society. To date they’ve raised over $150,000. All of the proceeds go to research for a cure, client services, support groups and clinical fellowships to encourage scientists to join the fight. According to Ande “Until there is a cure there will be enough. And until that happens we will continue to put MS in the forefront of what we do. Having a child with an incurable disease gives you a totally different outlook on life. You appreciate the little things that others take for granted. And you go forward to live your life with grace and dignity.”

The National MS Society Mid-Florida Chapter helps each person affected by the disease in our area address the challenges of living with MS.  The local chapter here in Tampa raises funds for cutting-edge research, driving change through advocacy, facilitating professional education and providing programs and services that empower people with MS and their families to move their lives forward.

Since starting with the Mid-Florida Chapter in 2003 I’ve watched this group go beyond the basics to develop programs for adults and children alike.  The annual kids’ camp provided the opportunity for children of patients to learn valuable coping skills while taking part in fantastic activities such as canoeing, arts, crafts and swimming. They’ve hosted multiple patient programs to help those young and young at heart plan for and live their best life possible while dealing with the day to day struggles associated with MS. When four hurricanes hit the Tampa Bay area in 2004 the Mid Florida Chapter provided emergency financial assistance to more than 75 families to help patients cover their expenses while dealing with fall-out from the storms.

I’ve taken part in almost every Tampa MS Walk over the last dozen years.  It is inspiring to hear the myriad of reasons people participate. They walk for sons and daughters, mothers and fathers, friends and co-workers. I’m always awestruck when I meet a volunteer who is also a patient.

They are often the first to man the registration table and pitch in where needed.   Bill Eady and Jackie Tinsky are among the most memorable in this group. I don’t know if Bill and Jackie knew each other. Each gave tirelessly to the cause in spite of living with MS. Depending on his condition Bill would show up with a cane or a wheel chair, whatever it took to get through the walk. Jackie was unstoppable. A full time school teacher and mom she found the time and energy to take on major roles in assisting the local chapter with each Tampa walk. A fatal heart attack in February broke our hearts and left a large pair of shoes to fill on the Tampa team.

You don’t have to be a person living with MS or even know someone with MS to get involved. It’s open to whoever wants to make a difference in the lives of those who do face this incurable autoimmune disease each day. Anyone can form a team and walk to raise money. After all, you never know when it might be you or someone you love that hears the words, “You have multiple sclerosis”.  Check out their site. http://www.nationalmssociety.org/Chapters/FLC

Join me at the 2015 MaSquerade Ball on April 18th, at the University of South Florida Gibbons Alumni Center, 4202 East Fowler Avenue in Tampa. Event details are posted on www.masqueradeoftampabay.org

Jackie Callaway, ABC Action News Consumer Investigator

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