FULL STORY: Wobbly Feet pitches Wifflemania tourney

MANATEE COUNTY — If you thought wiffle ball was just a kids’ game, think again.

This weekend, the game — complete with plastic balls and bats — will raise money to find a cure for Ataxia-Telangiectasia, as the East County-based Wobbly Feet Foundation Inc. hosts its first Wifflemania for the Cure tournament Sept. 24, at Longwood Park. The tournament will feature at least 10 teams as well as refreshments, music, a fast-pitch competition and more.

Mote Ranch residents Nick and Samantha Dzembo launched Wobbly Feet in December 2009, after their son, Connor, then 3, was diagnosed with A-T. A-T is a genetic neuromuscular disease that affects several body systems. It is characterized by a telltale wobbliness in a patient’s walking.

In most A-T patients, the wobbliness worsens over time. Eventually, A-T patients will require a wheelchair, often by age 10. They also have problems with their immune systems, making them more susceptible to illnesses.

Since its inception, Wobbly Feet has partnered with the A-T Children’s Project to co-fund three research projects. In 2010, the organization gave $10,000 to help Dr. Sharon McGrath-Morrow, a pulmonologist at the A-T Clinical Center at Johns Hopkins Hospital in Baltimore. The project follows McGrath-Morrow’s discovery that the level of an inflammatory marker called interleukin-8 is elevated in many A-T patients.

This year, Wobbly Feet gave $15,000 each to two studies. The first, led by Dr. Shyamal Desai, of the Louisiana State University Health Sciences Center School of Medicine, will examine whether defects in protein degradation contribute to brain cell death in A-T. Dr. Kamran Khodakhah, of the Albert Einstein College of Medicine in New York, will lead the second, which will explore the consequences of Purkinje cell loss on the function of the cerebellum.

Late last year, Connor battled an infection in his lungs for several months. Eventually, the Dzembos were able to obtain The Vest, an apparatus that, when worn, helps to move fluid out of the lungs. And so far, The Vest has helped to stave off any serious lung problems, Nick Dzembo said.

Today, Connor, now 5, is enrolled in pre-kindergarten at Kids R Kids in Lakewood Ranch. The Dzembos say they are starting to see some uneasiness in his balance as well as some evidence of A-T in Connor’s speech.

However, with three studies already funded in as many years, the Dzembos are hopeful that through Wobbly Feet, they can help find a cure not only for Connor but all children diagnosed with A-T.

“The studies we’ve focused on are the ones that deal with nerve degeneration — the worst part of the disease,” Nick Dzembo said.

Wobbly Feet also will be the beneficiary of this year’s Lakewood Ranch Scottish Festival hosted by MacAllisters Grill and Tavern Nov. 19.

Contact Michael Eng at [email protected].

Wifflemania for a Cure
WHEN: Sept. 24. Registration begins at 8 a.m.; games begin at 9 a.m.
WHERE: Longwood Park, 6050 Longwood Run Blvd., Sarasota
INFORMATION: www.wobblyfeet.org