Research, trials and studies, oh my!

“Everyone has something. Disability literally doesn’t matter, it matters who you are and how you affect other people.”-Kyle Bryant

I just heard this from another FA’er, Kyle, the other day and he nailed it.🙌🏼

Many people pre-judge someone based on what they have and not who they are. How a person reacts to their disability, the vibe they give off to the world and others knowing the person’s heart & soul is everything. 

I’ve come to a point in my life where FA has become such a norm for me. Of course, I’d love to not deal with these daily challenges, but I’ve learned to accept and adapt. And that’s what I want others to do with me. I’m not settling or losing hope in kicking FA’s ass or discontinuing participating in research trials; I’m just not dwelling and I’m finding the many ways to enjoy this crazy, beautiful life. I’ve come across people in my life who wanted nothing more than to ‘fix’ me. They couldn’t just accept what my hand of cards were. I hated that. After a while, it can make you feel broken. Like damaged goods. But that’s no way to live, right?! You ignore that shit and keep on, keepin’ on until that special someone makes you realize you’ve been doing it right this whole time and they adapt along side you. I have a lot of love and support from many people, but adding one more supporter who makes your heart warm & fuzzy, gives an extra boost of inspiration. 

Speaking of inspiration, I got my ass signed up for two more research studies starting next week. I know. Two trials…I’m such a badass. 

One of them is pretty easy peasy and doesn’t entail too much. It’s called ‘The Gait and Balance Study.’ Each visit will be quick and painless! 

The purpose of this study is to measure changes in walking and balance over 12 months.

The Study Procedures:
To come to the clinic 3 times over a 1 year period. During these visits I will have the following:

-have the study doctor watch me walk and see how well I use my arms and legs during these tests: Friedreich’s Ataxia Rating Scale (FARS): this will measure my walking and balance by having me perform different tasks, such as standing on one foot with my eyes closed for up to a minute. The doctor will also test my reflexes during this test.

-Scale for the assessment and rating of ataxia (SARA): this scale will measure my ataxia by looking at my walking, stance, speech, sitting, upper extremity movements and lower extremity movements.

-Timed 25 foot walk: I will be asked to walk 25 feet down the hallway as quickly as possible. I will complete this twice. During these visits I will be directed by the physical therapist to:

-walk on a mat several times at different speeds, perform 14 balance tests up to 3 times each, stand on a platform that measures my balance in different ways and lastly, wear a sensor on my upper arm for a week that measures physical activity and energy expenditure.

See, nothing to it!

The second trial has more ins and outs, and had me second guessing whether I wanted to go through with it or not. But someone told me “There will always be some risk for the reward.” Amen to that. All trials, studies and even FDA approved medication we pop in our mouth daily has oodles of potential side effects–and we take it anyway. I don’t want to miss out on something that could have such a positive outcome with FA, so I’m doing this. 👊🏼

This study is called RTA-408. Just the name itself makes you scratch your head. It is a semi-synthetic (man-made) substance from natural plant extract that has anti-inflammatory, antioxidant, and anticancer properties.
In this study, RTA-408 will be given as a capsule (pill).
This research study has 3 purposes: 1) To see if the RTA 408 pills are safe and well tolerated in patients with Friedreich’s ataxia. 2) To see if the RTA 408 pills affect patients’ exercise ability and Friedreich’s ataxia disease symptoms. 3)To test how the RTA 408 pills affect patients’ blood cells and muscle cells. 

The study will last 16 weeks, during which I will take once-daily study drug (RTA 408 pills or placebo pills) for 12 weeks. After the screening visit, I will be expected to come to the study center for clinic visits 8 times over the next 16 weeks, with visit intervals ranging anywhere from 1 day to 4 weeks. 

The study procedures and tests will include the following (don’t hold your breath on this part):

-demographic questions, medical questions, prior and ongoing medication questions, current health and side effect questions, health questionnaires. The super duper boring stuff. 
-EKG, echocardiogram, cardiac MRI, stress test, vision test, cheek swab, physical examination, Friedreichs Ataxia examination, dexterity test, 25-foot walk test, exercise test, muscle needle biopsy (which is optional and I’ll be doing a quick hell no to that. I’ve done that before and it hurts like a mother!), and lastly, blood work. 
Did I send you off to snoozeville?! All this medical talk is not interesting, unless you’re a nerd, like me, and research excites you. #nerdalert

Anyway, I’m excited for this new journey of research and it would be absolutely awesome for some positive outcomes. But even if there isn’t, that’s fine by me, too. That just means there’s more to look forward to in the future and to keep on truckin’. 

As you know from previous posts, I can’t disclose any results or outcomes of this trial until it is completely over and I get the ‘go ahead’ from the coordinators; but I’ll keep you posted on what I can share. Until next time…


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