As a person with Friedreich’s Ataxia (FA), the task of going on with life can seem a bit daunting. In more ways than one.
For starters, you can never truly forget about FA. It affects literally every area of your life. Even your SLEEP! So it is always there – always on your mind. Yes, you can distract yourself, but there won’t be a full day where I won’t, at least momentarily, think about it or curse it because of a difficulty or inconvenience it has caused. Therefore, you are always thinking about it, wishing it wasn’t so.
Secondly, I always feel like I could and should be doing more. I should be networking with other FA patients to find out what they’re doing to help ease their symptoms. I should be fundraising more. I should be a mouthpiece for FA with my local and state governments. I should be exercising more. I should be participating in clinical trials and more clinical studies. I should be more vocal on social media so that I am bringing more awareness. I should be working harder to cure this disease that is taking over my life, and the lives of so many others.
That’s why I am eternally grateful for the Friedreich’s Ataxia Research Alliance (FARA). They ARE working tirelessly, despite my lack of participation or efforts. They are passionately campaigning the FDA and pharmaceutical companies on my behalf. They are constant champions and warriors for the FA community. They are just as desperate for a cure as I am. I feel so blessed to know most of the folks at FARA and I feel confident that my future is in their hands.
When I first met Ron Bartek, the President of FARA, he said “we are in the business of going out of business. We want to cure FA so we can all move on.” YES! AMEN! I can’t wait for the day Team Kendall can announce, “we did it! We cured FA! Thank you for all of your hard work – we finished the fight and won! Now let’s all go on with our HEALTHY lives and live passionately, free of FA!”
I know that FARA will get us there one day. So in the meantime, I will do as much as I can to support them by raising awareness and funds for FARA.