I don’t wake up in the morning and pray for a cure. I don’t close my eyes at night hoping the researchers have a breakthrough tomorrow. I am probably worried about setting my alarm so I get up on time or what interview I’m going to do tomorrow.

Living with a progressive disease that is currently without an approved treatment or cure, I have great hope for a cure, but I hold onto that with a loose grip.

I fundraise, I advocate and I participate in an out-of-state clinical trial because I want to do anything I can to help advance research toward curing FA. There’s not just me to think about – there are about 15,000 people living with FA worldwide, according to curefaorg.

I DO because I BELIEVE. I have hope that FA can be cured, and I believe in FARA’s mission. They work day and night for a cure. Because again, it’s not just me.

In fact, some might say I’m in the earlier stages of progression. I’ve progressed to the point where I need a walker and a wheelchair for long distances, but I can still drive, I have good hearing and no vision loss, steady cardiac health, and little to no swallowing issues or diabetes.

I’m not saying that my battle with FA is easy, it’s surely not. Going to college while still walking on a big university is exhausting. But I want to acknowledge that while I might not think about a cure on the daily, there are others who are forced into a more desperate situation – a situation that I very well might be in someday.

I am not saying it is wrong to want a cure – FA is a harsh disease. Progression is relentless. It doesn’t care about your life plans. It doesn’t consider that you’re in a clinical trial and working out multiple times a week along with physical therapy. It just simply keeps progressing.

I want a cure too, badly.

But a hope FOR a cure is different from hoping IN a cure. My life won’t stop or pause while I wait for a cure. Hoping for a cure means waiting, but the waiting isn’t a silent period. Waiting, for me, means going through college, planning my career, looking at my future and my relationships without expecting a cure to “save” me. I intend to live my life as if a cure is not possible, and if it comes along, well, that’s awesome. My life just got easier.

I know it is possible. I believe it will happen. But I don’t know when or what it will look like. Is it like ‘poof, you’re instantly better’ or, more likely, is it years of therapy and progress? One drug or treatment or a combination of three at once to target different symptoms or body systems?

There’s so much unknown, so I am choosing not to put my hope in a cure.

I want to make my life what I want it to be whether I have FA or not. Of course, it will be easier if I don’t have FA. But I’m not going to drop everything and pursue a cure because I then risk wasting precious time on something that might not happen, at least not in my time.

Also, I think it’s an issue of God’s will for my life. I think it would be rather selfish to say my life can’t be good unless I have a cure. To waste the life He’s given me is incredibly ungrateful. I know God has the power to cure FA, but maybe it’s not his WILL. That’s really tough to say. I don’t like to see my friends suffer. It’s frustrating for me when I struggle, but out of the struggle comes power.

I have no doubt that my FA friends and I have become stronger, fuller people due to fighting FA, even if it feels like we are so empty sometimes.

Two words come to mind when I think about FA: keep fighting. That is why I say I hope FOR a cure, but I do not hope IN a cure.