The Merry Church Mouse

What is Friedreich's Ataxia? (FA)

Friedreich's Ataxia is a rare, genetically inherited degenerative neuro-muscular disorder. It affects approximately 1 out of every 50,000 people.  Most people who have this disorder are diagnosed during their childhood.  Many are wheelchair bound by their late teens or early 20s.  It is a life shortening condition because it usually also causes damage to the heart muscle and can also lead to diabetes.  The disorder does not affect the patient's cognitive abilities.  It results in the gradual loss of motor coordination and slurred speech.  Sometimes blindness, deafness and swallowing difficulties occur.

Currently treatments are very limited and there is no cure.

What is FARA?

The Friedreich's Ataxia Research Alliance (FARA) is an organization that is dedicated to helping to fight this disorder.  Everyone on staff with FARA is either a parent of someone with FA, or is otherwise somehow touched by FA in their daily life.  This is a very urgent and personal mission for them.  

One of FARA's main goals is to fund research to find a cure.  This is a very exciting time in FA research!  New discoveries have been made and research is yielding very exciting prospects for the future of these kids.  One of the great things about FA research is that it has the potential to impact other, more commonly known diseases such as Parkinson's, Alzheimer's, Huntington's and Lou Gehrig's Disease (ALS).  By funding research for FA, they are effectively funding research for all of these disorders and others as well. 

One of the difficulties of trying to research a rare disorder like this one can be lack of funding.  Funding can be difficult to come by simply because the general public does not know that this disorder exists.  FARA is striving to change that by raising awareness of FA.  

To learn more about FA or FARA and meet some of the patients and read their stories I invite you to visit FARA's website. www.curefa.org

Allison's Story

Allison and her Mom, Janet.  Sept. 2008

My niece, Allison, just turned 18.  She is a beautiful young lady!  She has a very sweet, tenderhearted spirit. She has a passion for animals and especially loves her dogs.  She has always been a quiet person, but once you get the chance to know her, she has a very fun and funny personality and sense of humor.

Alli was diagnosed with FA at the age of nine and has been coping with the effects of it since 2000. "Devastating" is a word that only begins to describe how it feels when someone that you love is diagnosed with FA.  I think I cried every day for a long time.  I kept envisioning scenes from the movie "Lorenzo's Oil".  While his disorder was different, I envisioned the effects to be similar. Only, it wasn't "Lorenzo" that I saw in my head, it was Alli.  Our Alli.  As time went on, one day I realized that I had two choices.  I could be "reactive" and wallow in the pain and devastation that I was feeling or I could be "proactive" and try to do something about FA.  Raising awareness for FA and trying to promote funding for research became a lifelong goal for me that day.  I realized that I am no doctor and all the medical stuff is far beyond my understanding.  Thank God for smart people!  I realized that what I know is crafting and sewing.  I decided to try and put that to use to help fund research so that those smart doctors who understand what they are studying could have the tools necessary to be effective.

Since her diagnosis Alli has gone from being able to walk unassisted, to using a walker, to using a wheechair part time, to using a motorized chair full time.  While it has been painful to watch, I know that there are people out there who are racing to find treatments and a cure.  That inspires great hope for the future!