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FARAFARA Cure FA

Patient Perspective: Antonio's Experience Participating in a Clinical Trial

Antonio blogMy name is Antonio Calmon. I am 41 years old and have been diagnosed with Friedreich's Ataxia for 4 1/2 years.  I live in Brazil but was fortunate enough to learn about FARA, its amazing team, and community soon after my diagnosis. It was like a torch shedding light on my way. I was able to participate in the FA Symposium and there I could learn about how the research process works, the clinical trials possibilities and about the amazing FA family. Since then my ties with my new family have gotten stronger, and I could even see many of my new friends at the Symposium again last year. This is a kind of event I want to attend as long as it is possible!

The beauty of science and daily dedication of scientists and staff engaged in the fight for treatment/cure is really amazing. At the same time that I admire all the work those people do, I also realize that us, patients, can also give a boost to research by participating in FARA's Global Registry. This is a simple thing to do: we just need to give them all the information that helps enhance medical knowledge of the disease and positively influences the course of research. There are many studies in line and my great fear is that the number of FAers enlisted won't be enough to supply the need for a large number of available volunteers for clinical trials. The best and faster way to find them is through the Global Registry but it seems that the FA patients global community hasn't realized yet about the power they have at reach to make clinical trials and, of course, treatment available in a faster pace.

Right now, I am very happy to be part of the Reata Moxie clinical trial. It was a stressful journey to get accepted but it was worth every minute of sleeplessness while waiting for the final decision. I applied to the trial as soon as I saw it announced on FARA's page. The age limit was 40 and I had to go through a rollercoaster of emotions because, given the calendar of pre-screening and screening tests, I could be 41 years old a few days before the end of the screening process. It was clear to me, for my family and for the center coordinators and researcher leader that the margin for blowing the time limit was very high.

The pre-screening process(in which it is determined if you meet basic study criteria) and the screening were very smooth. First, I had a phone interview with Lauren Hauser, the program coordinator at the research center I had chosen to apply - Children's Hospital of Philadelphia, three weeks after my pre-pre-screening. She asked questions about how the diagnosis was obtained and my health conditions. I got the first green light; the next step was to send a copy of my genetic test, a precondition to being a participant in the trial.

At that time I had enrolled in the FA Symposium in mid-October so I asked Lauren to schedule my screening for a date close to that event so that I could take advantage of the flight ticket I had already bought to attend the community meeting. Three days after I was in CHOP's office at the time requested (8:30 am). I spent 8 hours there, between going through 19 pages of the consent terms, first neurological examination by Dr. Lynch, blood tests, stationary bike test, MRIs, etc.

Antonio SymposiumNext day, I learned that I had passed the test and would have to do almost everything again to set the baseline to be considered in the trial. All I had done until then was just an admission test! I couldn't hold my excitement and decided that I would like to do my best. My next appointment was scheduled for two weeks later. Back to CHOP for the Baseline/start of treatment, I went through the whole testing process again for five hours only to learn early in the evening that my performance at baseline differed too much from the screening to be approved for the trial. My heart sunk but, a few hours later, I heard that volunteers in that trial were entitled a second chance. A new battery of tests was scheduled for two days ahead. No doubt that those 48 hours were the longest of my life. I believe the researchers and Reata realized that, as FAers, our symptoms don't follow a script and can be better or worse depending on the day.

Of the course, my symptoms were back on the new test. On the same day I did them, 36 hours before my birthday, I started taking the first pills of Omaveloxolone/Placebo. Needless to say how I felt. I flew back to Brazil with my first set of pills. Seven days later, I had a phone conversation with Lauren, the research coordinator, about my condition and possible sides effects. On the second week after I started taking the pills I was again at CHOP for follow-ups and evaluation according to the schedule below:

Baseline/start of treatment (5 hours long)

- Week 1 (phone call)

- Week 2 (8 hours long)

- Week 4 (3 hours long)

- Week 8 (phone call)

- Week 12 (2.5 hours long)

- Week 18 (3 hours long)

- Week 24 (4 hours long)

- Week 30 (phone call)

- Week 36 (3 hours long)

- Week 42 (phone call)

- Week 48/end of trial (4 hours long)

- Week 52/end of study (1.5 hours long)

At the beginning of August, I will be doing the 36-week meeting and screening and I already miss it. Being part of this trial is less about the personal benefit than about the opportunity to help advance studies which will hopefully result in treatment. That's what really makes me feel good. I shouldn't even talk about personal benefit because I really don't know if I am taking the placebo or not. In addition, as a foreigner and resident in a country in a bad financial condition like Brazil, I probably won't be able to have access to medications for FA, given the high prices that will possibly be charged to the ones who don't fit in the American health system and the fact it is extremely difficult to get permission to import medication in my country, mainly orphan drugs.

It doesn't curb my enthusiasm, nonetheless. I consider a gift the opportunity to be in the trial and I really hope that my participation will add a little more to the discovery of treatment and cure.

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