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FARAFARA Cure FA

Patient Perspective: Brittany's Experience Participating in Research Studies

Patient Perspective Collage 2Hello, my name is Brittany Sommerfield and I am 24 years old. When I was 11 years old I suffered from a Crohn's Disease flare up and was ultimately hospitalized for a month. Because I was bedridden for weeks my movements had become slower and unsteady. When physical therapy said I wasn't getting better after some months, I was referred to a neurologist. At this time as I was so young, I really didn't understand what was truly going on. Eventually, 'ataxia' was brought up to my parents and they started to look at their middle daughter (my older sister)- Chelsey; who was displaying similar symptoms at this time. Within a year, many tests were done and blood work was sent across the country. Then, just after I turned 13, in March 2007, my sister and I were given the genetically confirmed diagnosis of Friedreich's Ataxia (FA).


Like most at diagnosis, we were given the worst case scenario. My parents were told I'd be wheelchair-bound within a year, that there's no cure, and I'd die young... Which is something no parent can comprehend; how could this be? These are their young, healthy, normal teenage daughters. Why did this disease choose us?


And it is horribly cruel; reality is there is no cure (yet)... But there are so many ways to help. Like working-out or assistive devices and, of course, research.


Because of my young age, I didn't really learn what FA was until mid-2008. My parents had gotten in touch with some experts on this condition. We traveled from Manitoba Canada to UCLA in California to meet the brilliant Dr. Susan L Perlman. We starting the Natural History study first, which, like the name suggests, is not a drug trial but rather an observational study. Where the medical staff meets with you annually to collect information/data on those with FA to see how the illness develops.


Around this time, my sister and I were enrolled in our first clinical trial. We were on a double-blind dose of placebo versus Idebenone. Idebenone is similar to coenzyme Q-10 and helps our heart.


Time passed and visits were completed, I don't remember the full experience unfortunately but I remember understanding the harsh ways FA hurts you during this period.


Patient Perspective CollageLater on, we began the open-label for the drug of Idebenone- an extension of the trial offered to past participants in which both the researchers and participants know which treatment is being administered.  After many more visits to UCLA, the open-label trial ended and we were unable to continue on with Idebenone.


Instead of research studies, we decided to educate ourselves through conferences. Of course, as the natural history study is forever on-going, we were still in touch with Dr.Perlman during this time. Throughout the years of 2012 to 2014 we attended two NAF (National Ataxia Foundation) AAC (Annual Ataxia Conference) events as well as the 1 st annual Canadian Ataxia Conference in London Ontario. The events we all wonderful as we were finally able to meet others living with Ataxia!

In 2015, Chelsey and I participated in Reata's MOXie trial on omaveloxolone (RTA 408) at Emory in Atlanta, Georgia, with the fabulous Dr. Wilmot. Journeying 1600 miles, 6 times, within a 4 month period, things were definitely hectic. But alas MOXie part 1 cohort 3 was completed.


Shortly after this, I joined the FARA ambassador program. Working with the card team, the hangout and most recently co-hosting the blog team with Christin Haun, as well as joining the FARA ambassador leadership team! I attended both the 2017 and 2018 FARA symposiums and both RideATAXIA Philly events.


All in all, I began learning so much more! On the curefa.org blog is also where I learned about the research being done on our most recent clinical trial.


"Phase 2 study of TAK-831, sponsored by Takeda. This study will evaluate the safety, tolerability, pharmacokinetics, and efficacy of multiple doses of TAK-831 in adults with FA (Friedreich's Ataxia). Specifically, this study will look at upper limb motor function and manual dexterity of people who take TAK-831."


The key focus being the infamous 9-hole pegboard test.


I won't go into much detail on what testing is done as there are other patient perspective articles discussing just that. I will say this study (for my sister and I) was done at UCLA in California with Dr. Susan L Perlman. Which, is where we already venture to for the Natural History study every year. In all this is a 10-hour journey (when factoring in two flights, a layover, border customs, airport security, and ground transportation) from Winnipeg. It is not easy for 2 full-time wheelchair users. Luckily as we each are given one companion/attendant, we have both parents helping.


Patient Perspective Collage 3Between July 20th and November 7th, 2018 we had 4 in-site visits, a screening visit, multiple phone/email check-ins plus a one-hour exit call interview. It was insanely busy; managing this as well as my job as a travel agent and as a FARA ambassador was hard. I had to push myself sometimes but it was a rewarding experience, to say the least. We don't know what dosage we were given just yet (placebo vs low dose vs high dose) but I can wait. I understand everything takes time and patience is valued.


Other than learning my dosage, I am also anticipating to take part in the open-label extension of the MOXie trial which is being proposed for the coming months.


In the end, I have to admit clinical trials are amazing and the medical teams and scientists are so good to us. I can't stress the wonderful experience it is enough. People can't expect a cure without helping research. But I believe, absolutely someday, a cure will be found!


Also to mention, treatment for anything is a complicated process. If you find yourself as a patient in any kind of study and you feel no results coming. Remember everything done, failures and achievements are incredibly valuable for future knowledge on the topic. Embrace the learning curve and remember you are being helpful.


"Don't underestimate the power of your participation." – Kyle Bryant

Brittany Sommerfield Signature

 


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