Acting Together to Cure Friedreich’s Ataxia

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA).

He said, “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!”

Getting diagnosed with an extremely rare disease that I had never heard of was extremely isolating and discouraging. When I began looking for information, everything seemed so bleak and scary. I found list after list of symptoms I was destined to endure before FA took my life. Then, when I was desperate for a glimmer of hope, I found FARA.

I stumbled upon this Ron Bartek quote and it truly inspired me. I felt hopeful knowing there was an entire community out there striving for a cure just as urgently as I was. I was eager to join the efforts and see what could be accomplished!

Seven years later, that quote still gives me goose bumps, and that community still motivates me to keep fighting.

Before my diagnosis in 2013, I never imagined I would raise money for rare disease research. Yet, I formed “Team Kendall,” and my village supported the FA community. We strive to be part of the momentum that leads to a cure for FA.

Team Kendall acted with me, and we have accomplished so much! In just seven years, we have raised awareness and over $209,000 for FA research.

If I had remained isolated in my fear and despair, I would undoubtedly be a very different person with a very different outlook on FA.

I wouldn’t fight. I wouldn’t write columns for Friedreich’s Ataxia News, I wouldn’t participate in rideATAXIA every year, I wouldn’t go to physical therapy, and I wouldn’t use social media to raise awareness for FA. I wouldn’t try to live a “normal life” despite my disability.

The FA community removed my shame of needing help and made me realize it’s OK not to be OK all the time. They showed me there is hope balancing out the despair. Our community is compassionate, dedicated, determined, and smart. We are a small population, but we are passionate about our common goal of finding a cure for FA. On days when FA becomes too much to bear and I am too tired to fight for my future, there is always someone else fighting for the rest of us.

While I am all too aware of the relentlessly progressive realities of my disease, I still hope I will see a cure during my lifetime because of the FA community. And until that day comes, I will do what the rest of my community does: strive to live my best life and do what I can to cure FA.

It truly takes a village to accomplish a herculean task like curing a rare disease. If the FA community keeps working together, we can accomplish our goal of finding a cure. We can keep assisting the brilliant scientific minds working to cure FA by filling the patient registry, participating in clinical trials and research studies, and raising money to fuel all of those efforts.

And, in the meantime, we can keep our heads held high while drawing the necessary strength from one another to keep fighting.

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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.