January 2023 Clinical Trial Visit
After much deliberation over countless pros and cons lists, I’ve prayerfully decided to continue participating in the clinical trial for at least 6 more months.
I won’t bore you with my back-and-forth thought process before arriving at this decision, but I did want to share a little bit about my mindset going into my visit to Atlanta today.
So much is so frustratingly unknown, especially where Friedreich's Ataxia is concerned, but I do know a few things:
1. Continuing to participate in clinical trials and research studies will help by arming the scientific community with valuable information, so it’s an important part of my responsibility as a patient to keep making the effort. Then, hopefully, I can be a part of the movement to find effective treatments and eventually a cure. I am continuing in this trail in the name of science & hope, not just for access to the study drug.
2. So many people have asked me if this drug works. It’s impossible to know if the drug is having any effect on my progression. Since starting the drug in 2018, my symptoms have progressed significantly. Since I don’t have two simultaneous Kendall’s going through FA, one on the drug, one not, it is impossible to say with certainty that the drug helps or doesn’t. While I don’t know if this drug is slowing my rate of progression or not, I do know that it’s not enough. My symptoms are progressing and it terrifies me. My body needs more aid to fight FA than this drug is providing.
3. I am so in love with my husband. He is the most supportive, positive, selfless, strong, determined, funny, and caring person. He makes my world go round, and makes these clinical trial visits tolerable.
4. So much is out of my control. But God is in control, and I find comfort in that fact often.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 2 Corinthians 1:3-4