Livingston residents Maureen and John Sweeny didn’t know what was wrong with their son, but something was definitely not right.  Although he went to the PRIDE program, the Sweenys were noticing that the child had problems with his fine motor skills.

His symptoms were multi-faceted, leading them to many doctors, many tests, and no answers.  Finally, in September 2009, they received a firm diagnosis:  their 4-year-old boy had Friedreich’s Ataxia (FA), a debilitating, life-shortening, degenerative disorder which causes individuals to have a loss of coordination (ataxia) in the arms and legs, fatigue easily, develop aggressive scoliosis (curvature of the spine) and have a serious heart condition called hypertrophic cardiomyopathy (enlargement of the heart), among other conditions. 

Astonishingly enough, another child in their neighborhood had exactly the same thing. The Sweenys’ world changed forever. 

There is no treatment for FA.  However through the efforts of the Friedreich's Ataxia Research Alliance (FARA) real progress is being made to slow, stop and reverse the damage of FA through medical research and clinical trials.  FARA funded research is also providing insight into treatments for other neurodegenerative diseases that share common mechanisms such as ALS, Parkinson's, Huntington's and Alzheimer's.

The Sweeny family quickly became acquainted with FARA and attended a walk-a-thon in Seaside Park last year. Team Sweeny alone raised $6,000. 

This Saturday, the Sweenys and several other families from New Jersey, are hosting a “Seaside Stride” fundraiser designed to raise awareness of FA by including 10 families from several New Jersey counties who have children with FA.  They are inviting you to walk and raise funds in honor of: Leonidas, Connor, John, Keith, Lindsay, Suzanne, William, Stephen, Dylan, Keith, Joey, Morgan, David and Dan.

The three-mile walk will take place on May 21 at 12 p.m. starting at St Catherine's Church on 50 E Street in Seaside Park.  They families are looking to help organizations such as FARA in supporting them and the important research that is being done to provide treatment and a potential cure to those afflicted with this life altering disorder.  Following the walk, there will be a luncheon hosted by Carrabba’s Italian Grill and Starbucks Coffee along with a basket raffle. 

“So far this year, we’ve raised $28,000. We’re trying to raise as much as possible for research and to, hopefully, find a cure for Friedreich’s Ataxia,” Maureen Sweeny said.

To learn more about FA, log onto www.curefa.org.  From there, click on “Events” and you can make a donation toward the “Seaside Stride.”