Joining the Most Important Game of My Life

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by Matt Lafleur |

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Somewhere, it’s like a whistle has been blown urging me to get off of the sidelines and into the game.

Finding a treatment for my rare disorder is a lot like a professional football game. Crazy metaphor, I know. The progression of Friedreich’s ataxia (FA) ended my athletic career right as it began when I was 11 years old. My coordination was degenerating while others were becoming more coordinated. I never became an athlete.

Now it seems there is a metaphorical football game happening in front of me. The home team I’m rooting for is mostly made up of medical scientists, even if they’ve never considered themselves athletes before this game. They heroically drop their bookishness and bowties to sweat, run, and outscore an intimidating opponent.

Friedreich’s ataxia is the team’s fierce foe; it’s not even a person, but rather a cruel and seemingly unstoppable genetic disorder that kills patients slowly year after year. Every play that our heroic team of scientists makes is cut off, flattened, or intercepted by the unflappable opponent.

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Though the specific gene that causes FA was discovered in 1996, there is currently nothing available to specifically stop or slow the disorder’s progression. There have been many attempts to develop a treatment for this rare disorder, and though most have failed, one potential therapy is being submitted to the U.S. Food and Drug Administration for approval, and clinical trials are underway for others.

Although Team FA seems unbeatable to this day, I’ve decided I want to help change these stats by participating on the field.

I may compare FA to a daunting and unstoppable football team, but I don’t mean to trivialize it as a game. Not only does FA cripple me unceasingly, but it also kills people all over the world constantly. If left unchecked, it will kill me, too. Stopping FA is fundamentally important to me.

Maybe it’s finally time for me to get off of the sidelines and join the team trying to beat back FA. The team of underdogs. The dark horses.

Probably the most important way I can participate in this football game is by participating in clinical trials. As potential treatments move down the research pipeline, FA patients like me will be needed in the trials.

This gives me a much-needed sense of purpose. I realize I’m not stuck helplessly on the sideline.

The first step to participating in a clinical trial is to have current genetic test results for the trial overseers to review, allowing them to determine if that person is an appropriate candidate for that study. Since my only genetic test was from 2001 and was conducted by a research lab instead of a clinical lab, I needed current results to see if I qualify for any trials.

To get a current genetic test, I asked my local physician to contact Baylor Genetics. The genetic testing company then mailed me a kit containing empty blood vials, paperwork, and a return package. All I had to do was bring this kit to my local hospital, get my blood drawn per the instructions, fill out the paperwork, and send my blood samples back to Baylor in the prepaid package. My medical insurance covered all the costs. I am now waiting for the results to be sent to my local doctor.

After getting the uncomfortable prick and packing the vial of blood into the return envelope, I felt somewhat accomplished. I had taken all the necessary steps. Once the results come in, I will make copies and then apply for multiple upcoming clinical trials.

For me, and maybe for most FA patients, I’ve often felt like a spectator when important things happen. But in the fight for our lives, I choose to join the offense.

Keep in mind that even with an updated genetic test, we may not be accepted into every study. But every team needs defensive players, too, who can help out by donating, fundraising, and raising awareness of FA.

Please browse a list of current clinical trials here. Volunteer for one. Be a part of the cure.

It’s time to get off the bench and into the game.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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