The local branch of the Charcot-Marie-Tooth Association has planned its second annual Shark Fishing Tournament for Saturday, Sept. 19, at Olde Fish House Marina.
“Most people aren’t familiar with Charcot-Marie-Tooth disease,” organizer Ellen Eagle said. “I’ve had CMT (Charcot-Marie-Tooth) since I was 9 years old and some doctors don’t even know about it. It’s an inherited disease that affects the peripheral nerves outside the brain and spinal cord. There are more than 70 different kinds of CMT and each one affects people differently. It falls under the Muscular Dystrophy umbrella and affects about 2.8 million people.
“My symptoms started when I was 9 years old when my mother noticed I was dropping my foot, stumbling and sometimes falling,” Eagle said. “Balancing is a major issue with CMT. My father had the disease but when he was diagnosed as a child they thought it was polio. My mother took me to doctors where they did nerve conductor tests which showed I had some neuromuscular disorder. They finally identified it as CMT.”
CMT is just one kind of neuropathy (also called peripheral neuropathy), meaning simply that the peripheral nerves are damaged. There are many other causes of neuropathy, including the most common cause – diabetes.
Ellen Eagle; her son, Joel; and sister, Patty, all have CMT. The disease has resulted in muscle atrophy and sensory loss in hands, feet and legs with chronic constant pain.
“For the sake of all the children who are affected now and for future generations, a cure is needed. As of yet there is no cure; however, research is under way for finding a cure and stopping the progression,” Eagle said. “Our goal is to raise money to find ways to stop the progression of CMT for those who have it.”
More information about CMT can be found at: www.cmtausa.org.
“It’s also an opportunity for CMT sufferers, their families and friends and our community to get together for a fun filled time,” Eagle said. “Lots of gifts to raffle and lunch available at a reasonable cost. We are also seeking sponsors for this cause.”
Sponsorships available include:
– $300. Will ensure level one advertisement for you with your logo and business name prominently displayed upon our t-Shirts, fliers, and Facebook page.
– $200. Will ensure level two advertising for you with your logo and business name displayed in large print upon our t-Shirts, fliers and Facebook page.
– $100. Will ensure level three advertising in smaller print of your logo only, on t-Shirts, fliers and Facebook page.
The captain’s meeting is at the Olde Fish House, Friday, Sept. 18, at 7 p.m. Fishing starts Sept. 19 at 7 a.m. Anglers need to be in by 3 p.m. to qualify. The cost to participate in the tournament is $50 for adults and $25 children under 13. Fishing starts at 7 a.m. and anglers need to be in by 3 p.m. to qualify for prizes.
For more information, e-mail firstname.lastname@example.org for more information or call 239- 283-8806.