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FARAFARA Cure FA

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

PatientPerspective Christina1My name is Christina Logan. I am 27 years old and have been diagnosed with Friedreich’s Ataxia for 7 years now. I am a strong advocate for the FA Community; I once was a FA Ambassador who managed the social media accounts for the Friedreich’s Ataxia Research Alliance (FARA), and I am now enrolled in my third clinical trial. I live independently and work full-time in Philadelphia, PA. I have an amazing support system of family, my fiancé- Justin, friends and FAmily who help me do what I do every day.

I truly believe in the quote, “hope is stronger than fear.” Hope is an emotion that my family and I feel after we attend the Friedrich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia (CHOP) every year. The past symposium, held in October 2017, Takeda Pharmaceuticals was discussed during the research pipeline presented by FARA’s Executive Director, Jennifer Farmer. She mentioned that Takeda Pharmaceuticals had a phase 2 trial planned for TAK-831. The purpose of this study is to see if TAK-831 improves daily activities of life by evaluating upper limb motor function and manual dexterity. What stuck out to me the most is the possibility of improving daily activities of life and dexterity. 

Soon after the symposium, my employer, The Bellevue Hotel, hosted Takeda Pharmaceuticals and their TAK-831-1501 Investigator Meeting. What are the chances that doctors, investigators, researchers and scientists would meet about an FA trial where I work? I had the privilege to be a guest/patient speaker at the meeting with Kyle Bryant. We each demonstrated the neurological FARS exam (bulbar, upper limb, lower limb, peripheral nerve, and upright stability/gait functions along with a functional staging and activities of daily living (ADL) conducted by Dr. Lynch from CHOP since these are the performance evaluations that are to be completed when on the study. We were also able to thank everyone for what they are doing and let them know how drug development impacts our lives. It was truly remarkable to be in a room full of hard-working individuals who are fighting with us and want a cure just as much as us patients do. We also had the opportunity to meet Dr. Hao Wang, the Senior Scientific Director of the company. Takeda Pharmaceuticals focuses on diseases such as Friedreich’s Ataxia that have unmet medical needs. You could feel this spirit in the room because it made a difference when they met Kyle and myself.

After this inspirational and motivational day, I patiently waited for the email announcement that the study would be taking place at CHOP, since it is the closest study site to me. The clinical trial was officially announced the second week of January 2018. After going through the phone screening interview process, I then had to go through a series of baseline tests at the hospital to see if I was eligible to participate in the study. I successfully passed and was ready to begin this three-month journey.

PatientPerspective Christina2TAK-831 consists of a pre-phone screen interview, five hospital visits and a post screen interview conducted by a representative from Takeda Pharmaceuticals. Out of all the trials I participated in, this is the first time this post screen interview was a requirement. I think it’s critical for Takeda to hear our feedback and experiences being in the clinical trial. By the second visit, I began taking the drug (not knowing if it was placebo or the actual drug since the study is double blinded). During each visit moving forward, I will complete the neurological FARS exam, the infamous 9-hole pegboard test, speech and vision evaluations and motion sensors test. I like the speech evaluation and motion sensors the most because it has never been a performance evaluator before.

Overall, I have been having a positive experience being in the TAK-831 trial. With being local, Takeda likes to ensure I get to and from the hospital safely, so they arrange a door to door car service (this was especially helpful during the Eagles Super Bowl Parade and many street closures!). They also work with a third-party reimbursement company which makes the process easy with a quick turnaround. Out of the other two trials I completed, this is the most seamless.

Starting a clinical trial can be scary with the risks of 1. not knowing if you will benefit or harm yourself of what you're putting in your body 2. if you have the actual drug or placebo and 3. becoming hopeful for the FA community. However, there are two main reasons I am participating in this trial. 1. to find a treatment and/or cure for my FAmily to improve the daily activities of our lives and stop the rate of progression of Friedreich’s Ataxia. I just completed grad school (3.5 cum laude!), work full-time and currently planning a wedding (soon to be a Mrs. On 10/20/18!) that I am keeping future, family and career as my priorities and I don’t want FA to get in the way! 2. My younger brother (16 years old), Matthew was recently diagnosed with Friedreich’s Ataxia two years ago. He currently doesn’t experience any signs or symptoms, but I want it to remain that way. All I hope is for a treatment or cure in his lifetime and that his life remains FA free! Together we WILL cure FA!

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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