Blog | teamkendall

Why do FA patients ride trikes?

Mar 7, 2015

Why do FA patients ride trikes?

I am sure you have noticed that a lot of my pictures for RideATAXIA are of me on a recumbent trike. Wonder why? Well the answer is quite simple – because I have Friedreich’s Ataxia (FA). Most FA patients experience a lack of coordination that makes balancing difficult. In fact, my thrown-off balance is what made me visit a neurologist in the first place. My legs just didn’t cooperate like they used to and I was tripping and stumbling a lot more than I had a few years ago. Whe

What is it really like to have FA?

Jan 12, 2015

What is it really like to have FA?

In this video, Kyle Bryant (Friedreich’s Ataxia (FA) patient and RideATAXIA creator) talks FA with Tampa Bay Buccaneers player Ronde Barber. Kyle gives a great explanation of FA and the science behind what causes FA symptoms, while Ronde helps explain those symptoms with metaphors. If you would like additional information about FA, check out all of the About FA page. To learn more about my symptoms and how my case has progressed, see the About Kendall page. If you have any qu

Pregnancy and Friedreich's Ataxia

Jan 5, 2015

Pregnancy and Friedreich's Ataxia

I found out that I had Friedreich’s Ataxia (FA) on August 19, 2013. At first, I thought that the entire future I had planned for my husband Kyle and I was gone. I thought that I would physically deteriorate quickly and have a poor quality of life, and most sad of all, I thought that having children was out of the question. After meeting with several specialists, I learned more about my specific case of FA and was told “if you wanted to have a family before you were diagnosed

Sep 10, 2014

2014 FA Symposium

As you probably recall, we just passed the year anniversary of my Friedreich's Ataxia diagnosis (August 19th). To reflect on the past year and how far we have come, I wrote a blog post entitled "What a Difference A Year Makes." Through the power of social media, my post made its way over to the folks at the Friedreich's Ataxia Research Alliance (FARA). Felicia with FARA contacted me a few weeks ago regarding this blog post. She had passed it along to Jen Farmer, the Executive

What a Difference a Year Makes

Aug 18, 2014

What a Difference a Year Makes

What a difference a year makes! On August 19, 2013, I was diagnosed with Friedreich’s Ataxia (FA). At the time, I knew nothing of the disease except that it was serious and currently had no cure. I felt so hopeless and afraid because I didn’t know any better. When I first learned that I had FA, I thought that my life was over. All I remember from those first few days after the diagnosis was the scary information I read on the internet which was full of bleak information and o

Jul 9, 2014

Guest blog post to help raise awareness!

A new friend of mine, Lora, is living with Rheumatoid Arthritis. However, she is not letting the chronic illness hold her back! She has a daily blog where she posts inspirational words of wisdom. She graciously offered me the opportunity to write a guest blog post to help raise awareness for Friedreich’s Ataxia! To read my post, click here. And don’t forget to follow her blog for a daily dose of inspiration. #teamkendall #friedreichsataxia #symptoms

Jul 7, 2014

FARA Newsletter Featuring Team Kendall

The Friedreich’s Ataxia Research Alliance (FARA), just released the new summer edition of the FARA newsletter- The Advocate! I recently had the honor and pleasure of speaking with Kyle Bryant, the Founder & Director of Ride Ataxia. Ride Ataxia is a fundraising program of FARA. We discussed Team Kendall’s first appearance in the 2014 Ride Ataxia Dallas for the newsletter! You can see the write up on page 9. There is also a lot of great information about what is going on in the

Jan 21, 2014

Friedreich's Ataxia Treatment Advancement

The Friedreich's Ataxia Research Alliance announced today that BioMarin Pharmaceutical, a company with a strong commitment and success in developing treatments for rare diseases, will be taking the Histone DeACetylase (HDAC) inhibitor program forward. Click here to access FARA's press release as well as a press release from Repligen and BioMarin. With this exciting news, we are reminded of the important work our donations fund. Thank you to everyone who has had a part in maki

Jan 2, 2014

What causes FA symptoms?

As we know, Friedreich's Ataxia (FA) is a genetic disease. You have FA if both of your parents passed on a damaged allele to you. Every FA patient experiences the disease differently - there are different onset ages, symptoms and severities. What we have learned is that FA symptoms are caused by low cellular levels of a substance called frataxin, due to insufficient activity of frataxin genes in our DNA. Frataxin is a protein which our bodies produce naturally. Frataxin