As 2023 comes to an end, we’re just getting started

A look back at the progress made in the Friedreich's ataxia community

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by Matthew Lafleur |

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BioNews CEO Chris Comish often repeats the phrase “We’re just getting started.” He’s said it so many times that it’s become an unofficial motto at the company. But the phrase is more than a well-wish; it’s also a call to action and a reminder to stay the course because bigger victories are ahead.

As I reflect on Comish’s message, it seems to be part of a through line for me, not only at work, but also in my journey with Friedreich’s ataxia (FA). It’s fitting that the Friedreich’s Ataxia Research Alliance (FARA) recently released a video titled “FA Community: We’re Just Getting Started.”

Why the FA community is just getting started

It’s common for those of us with disease to experience stagnation and feel that our actions are fruitless. Hearing that “we’re just getting started” in a video about the current state of research and progress in the FA community ignites my drive to persevere. It reminds us that our efforts are worthwhile, even when we’re filled with doubt.

When FA patients like me were diagnosed, we faced a hopeless medical situation with no treatments or cure. As the video states, all we could do was stay active and participate in research while hoping that maybe one day a treatment or a cure would become available.

On Rare Disease Day this year, that hope became a reality. As I’ve mentioned in most of my columns since then, on Feb. 28, the U.S. Food and Drug Administration approved Skyclarys (omaveloxolone), the first treatment for FA. Suddenly, our untreatable disorder became treatable, and achieving a sense of hope within the FA community didn’t seem like such an unrealistic goal.

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But the video reminds us that instead of stopping there, our work is just beginning. Our tasks now include expanding access to Skyclarys so that FA progression can be slowed for more patients while additional treatments and even a cure are developed.

At the end of the video, several FA patients express their gratitude, which I want to echo. Those who have supported research have gotten us this far. But the FA community is just getting started.

Why I’m just getting started

When I started writing this column in 2018, I expected to obtain a full-time job that put my master’s degree in counseling to use. I thought the writing gig would be a side project that allowed me to advocate on behalf of my community. I chose “Little Victories” as the column’s title because at the time, all we could do to withstand FA’s progression was tweak our mindsets. Instead of brooding over our obvious limitations, we could focus on our small successes.

Today, we can shoot for huge victories.

Here’s to many more victories to come that will slow, stop, reverse, and cure FA — because we’re just getting started.

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.


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