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A journey of hope for families seeking cure for Friedreich’s Ataxia

Posted on Monday, July 22, 2013 at 9:32 am

The Slim’s Journey: FARA 5K Run/Walk will be held on Sept. 21 at College United Methodist Church 701 East Main St., Warrenton. This is a Run/Walk that will benefit the Friedreich’s Ataxia Research Alliance (FARA). FARA is a national, public, 501 © (3), non-profit, tax-exempt organization dedicated to curing Friedreich’s Ataxia (FA) through research. The organization was made through dedicated parents who started to search for a cure. This 5K is to raise much-needed funds for research to find a cure for FA.

FA is a progressive, debilitating neuromuscular disease. FA affects coordination and balance and eventually leads to a life altering loss of mobility, speech dysfunction and hearing loss. It challenges the ability of children and adults to live an active life. FA also presents serious risk of diabetes and life shortening cardiac disease. Although considered a rare disease, a significant number of children and adults suffer with FA.

In just 10 years, FARA has begun to foster the development of the most promising discoveries to slow, stop and reverse the damage of this disease. Currently, there are several clinical trials and prospective treatments in the pipeline. FARA funded research is also providing insight into curing other neurodegenerative disease that share common mechanisms such as ALS, Parkinson’s, Huntington’s and Alzheimer’s.

The public is invited to participate or sponsor Slim’s Journey: FARA Run/Walk. Community members, such as Connie Maher, know first hand the tragedy FA can cause. It’s not only those who are living with FA that suffer, it’s their families and those around them that take on the disease too.

Maher has three sons, Brent, Kevin and Jeffery that unfortunately suffer from FA. Kevin, at the age of 20, passed away due to congestive heart failure, only one of the many side affects that come with FA. Brent and Jeff both suffer from diabetes and are insulin dependent and are both confined to wheelchairs. Slowly, FA affects the voice and the vocal cords, as well as hearing. When suffering from FA eating can become difficult due to loss of muscle strength. Maher has to watch as these symptoms take over her son’s lives and become more prevalent in their daily routines.

If anyone would like to sponsor the event there are donation packages as a way of exposing a business to the expected 200 plus participants this year. The package options are “Gold” Sponsor – $500, “Silver” Sponsor – $200, or “Bronze” Sponsor – $75.

With love and support a cure will be found for Friedreich’s Ataxia. If you would like to become a sponsor or a donor for the Walk/Run, please contact Connie Maher at (636) 528-6469 or email Maher at

“Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will NOT accomplish.” – Ron Bartek, FARA President.

Pictured are team mates and family members in a previous run/walk to raise funds in the battle to find a cure for Friedreich’s Ataxia.

Pictured are team mates and family members in a previous run/walk to raise funds in the battle to find a cure for Friedreich’s Ataxia.