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Reflections from a Treatment Study

I spent the last two weeks in New Jersey participating in a treatment study. The goal was to study the safety and tolerability of a potential FA treatment. This treatment has shown promising results in animals and is now being tried on humans. Without saying too much, I will say that I'm very encouraged and very hopeful that FA will start to be treated in the near future.

But what if it isn't?

Now more than ever I am motivated to raise awareness and resources for FA research. Why? For the first time in my life, I met others who also have FA. Now, it is bigger than me. Now I am not just talking about a rare disease. I'm talking about people, personalities, faces, names, families, friends.

One of these people is Corey.

Corey and I became friends right away. We bonded over a love for sports, fashion, NBA 2K, Uno, and obviously, being diagnosed with FA. Corey was diagnosed when he was just 15. It is people like Corey that make me want to fight even harder to find a cure for Friedreich's Ataxia.

But, again, what if there is no cure in my lifetime?

When you don't have something, it is easy to believe that if you had it, you would be happy. For some it is money. For others, success. Fame, accolades, certain friends, a perfect family. The list goes on and on.

If I just had that one thing then I would be happy.

Who hasn't thought that? All it takes to realize that this is a lie is to achieve what you are hoping for. Fame. Money. Success. Recognition. Plenty of people end up with these things and still feel incomplete. They still feel empty inside.

The truth is that there is happiness, and then, there is joy. Happiness is circumstantial while joy transcends situations. Happiness is a feeling. Joy is a choice. It is great to have both. But what about when happiness is nowhere to be found?

I hope that FA is cured in my lifetime. I would love to run. I would love to play pickup hoops with my friends. I would love to play catch someday with my son. I would love to go for hikes with my wife.

But maybe it won't be. Maybe I won't get to do these things. Either way, I will choose to have joy.

Life is too short to spend time wishing for something we don't have, while failing to enjoy the very things that are right in front of us.

What are you hoping for? Wealth? Family? A spouse? Success? Health? There is nothing wrong with any of these things. Pursue them. Just don't forget to have joy along the way.

I hope that FA will be cured. If not, I will choose joy. If not, I will keep fighting. I have found something greater than health: the knowledge that I will spend eternity in a restored body and a redeemed world where there is no more pain and sorrow.

Choose joy.

Keep on fighting.


Jesus answered, “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.”

John 4:13-14


Fall is upon us! Stay warm and keep on fighting rare disease in style with some TEN20 gear.


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