Odds and ends

Mama T doing all the hard work

There aren't many blog weeks left and there are still a few things I'd like to mention.  And in digging through a lot of old family photos for this fundraiser, I found A LOT of pictures of canoes.  I guess that's because we spent a lot of family time paddling around the east coast of the U.S. and Canada over the years.  This is my chance to use some of those up, too.

Registration for Ride Ataxia Northern California is open!  And the price goes up on April 14, so if you like to ride bikes and support the search for a cure for Friedreich's ataxia, here's a chance to do both on a Saturday morning!  Registration and more info are here.


JPT in his element

Kyle Bryant is the founder and director of Ride Ataxia.  He's also the name sake of the Kyle Bryant Translation Research Grant.  Through fundraisers like Ride Ataxia (and this one!) FARA has provided more than $10 million in research funding to scientists at public and private organizations.  In the beginning, funding priorities were focused on basic research to understand the cause of FA and the pathophysiology of the disease.  While there is still more to learn about the mechanism of FA, great progress has been made on this front and the focus has shifted to translational and clinical research. Translational research seeks to take a concept from the lab and develop it into a tangible treatment for FA patients.

CMT was awarded a research grant too! For brains, not FA.

As we enter the homestretch, Sunnyvale to Boston has raised $3507!  If you're still inclined to make a donation and, like me, you sometimes need multiple reminders to get something done, you still have 10 days left.  I don't know how long my page will be active after race day.  But FARA will continue their hard work until there is a cure for FA, and I know many readers will continue to support them for years to come.  Me too!

Cruising with CMT in Novia Scotia

Blog reader Megan left a comment on my post last Friday. 

"What made you get tested?"

Good question!  Certainly no one made me.  I was 18, so medical decisions were my own to make, and I didn't feel pressured by my parents in any way.  And it certainly never occurred to me that I might have FA because both Patti and Garrett's symptoms began in childhood.  Now I know that late onset FA can occur at any time in adulthood.  Kyle's symptoms didn't become significant until he was a teenager.  I think the opportunity to get tested came at a time in my life when I was living on my own for the first time, and learning a lot about myself, and this was just another piece of information I wanted to have.


Have fun carrying all this gear Mama T!