Wobbly Feet finances first case study

MANATEE COUNTY — Just one year after East County residents Nick and Samantha Dzembo launched their non-profit organization Wobbly Feet Foundation Inc., the group has earmarked $10,000 to help fund its first medical research project.

Wobbly Feet, in partnership with the A-T Children’s Project, will co-fund a $20,000 study about the role of inflammation in Ataxia Telangiectasia patients. A-T is an extremely rare, genetic neuromuscular disease that affects several body systems.

Dr. Sharon McGrath-Morrow, a pulmonologist at the A-T Clinical Center at Johns Hopkins Hospital in Baltimore, will lead the two-year study beginning in January 2011. The project follows McGrath-Morrow’s recently published discovery that the level of an inflammatory marker called interleukin-8 (IL-8) is elevated in many A-T patients. The discovery suggests systemic inflammation may contribute to some features in A-T.

“That marker has appeared much higher — 110% higher — in A-T patients than in the average person,” Nick Dzembo said. “The question is, ‘Why?’”

McGrath-Morrow and her team will investigate not only the IL-8 marker but also others in the blood of A-T patients to determine whether those elevated levels are stable. They also will examine whether an antibiotic called azithromycin can lower those markers. The team hopes knowledge of the elevated markers may help provide effective treatment.

The Dzembos launched Wobbly Feet as a 501(c)(3) organization in December 2009 after their son, Connor, then 3, was diagnosed with A-T. Connor battled frequent respiratory infections as an infant, and later as he learned to walk, the Dzembos detected wobbliness in his steps.

That wobbliness — a telltale sign of A-T — eventually led the Dzembos to a neurologist at Shriners Hospital in Tampa, who confirmed Connor’s DNA contained the specific genetic mutation for A-T.

In most A-T patients, the wobbliness will worsen over time. Eventually, A-T patients will require a wheelchair, often by age 10. They also often have problems with their immune systems, making them more susceptible to other illnesses. The most common cause of death in A-T patients is pneumonia, Nick Dzembo said.

In the past few months, Connor and his parents have endured an ongoing battle of illnesses. Connor contracted salmonella poisoning last fall, and while he was in the hospital, caught an infection in his lungs.

However, Connor is recovering and now is back at school at Kids R Kids in Lakewood Ranch. He will start pre-kindergarten classes there next year.

Nick Dzembo said he and his wife are ecstatic that their work through Wobbly Feet has yielded actual work in such a short amount of time.

“We’re a small foundation,” he said, noting Wobbly Feet has only six board members and 10 volunteers. “We can’t put on these huge galas; we just don’t have the manpower.”

However, through fundraisers such as Lakewood Ranch’s Music on Main, a St. Patrick’s Day event at The Lucky Pelican Bistro and last week’s Charity Bartending Night at The Polo Grill and Bar, Wobbly Feet managed to raise about $40,000 in its first year.

And now, with the case study starting next month, the Dzembos are proud to show their donors that their money already is being put to use.

“We’re very pleased with what we’ve done so far,” Nick Dzembo said. “We’ve been blessed this year, and we’re pumped (for next year).”

Contact Michael Eng at [email protected].

Ataxia-Telangiectasia
A-T is a genetic neuromuscular disease that affects several body systems. A-T surfaces when both parents are carriers of a specific genetic mutation and pass it on to their child. It is extremely rare, with only about 500 children in the United States currently living with A-T.

Ataxia causes the degeneration of the cerebellum that leads to a lack of muscle control, which causes slurred speech, wobbliness and eventually confines the patient to a wheelchair.

Telangiectasia appears as red spider veins in the corners of the eyes, on the ears and cheeks.
Children with A-T often have immune system problems that leave them more susceptible to respiratory infections. A-T patients are 1,000 times more likely to develop malignancies of the blood system. Lymphoma and leukemia are particularly common.

Source: A-T Children’s Project

Wobbly Feet Foundation
For more about Wobbly Feet Foundation or to get involved, visit the organization’s website, www.wobblyfeet.org.