Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

Downloads

 

 

Please check out the new "Downloads" section (to the right) for some Ride Ataxia promotional material.

 

 

Support

 

 

In the past couple of months I have been a few places with the Ride Ataxia banner and I have received emails from all over with picture attachments from Ride Ataxia supporters:

In September I made a trip to Seattle, WA to perform a wedding ceremony for two of my best friends Andy Smith and Kristine Strobin:

I became an Ordained Minister online for $19.50 and now the couple is happily married...

While I was in Seattle, it happened to be International Ataxia Awareness Day (September 25) so I had lunch with the Seattle area Support group:

The 2009 NAF Annual Membership Meeting will be held in Seattle. I cant wait to hang out with you all again!

I also hung out with a new friend, Sam. Here we are with the Space Needle in the back ground:


Friends from last year's ride have been representing for Ride Ataxia. The Henrys drove 3000 miles from Dallas to Charleston and back with Ride Ataxia signs plastered to their car. Here's Dave:

David "Spinner" Henry rode 400 miles with us last year and is training for the ride to Vegas this year:


The Bryants and the Krills show their support during a recent trip to Yosemite:


A couple of weeks ago, I attended NAF's All California Ataxia Research Meeting (ACARM). I met a lot of new friends and saw some old friends such as Dr. Susan Perlman and Dr. David Herman a dedicated researcher at Scripps University in San Diego. There were talks about research, massage therapy, physical therapy, and adaptive sports. I had a great time and took away some new knowledge.


Thank you all for contributing to the support of this cause, I encourage everyone to download their Ride Ataxia banner here and show your support, just email the picture to me at kyle@rideataxia.org.

We are making strides in the planning of Ride Ataxia II so stay tuned for details and save March 15-27, 2008 to join us for another epic journey.

Bonus pic:

 

 

 

Ride Ataxia Around the World

 

SHOW YOUR SUPPORT FOR RIDE ATAXIA

A few weeks ago a couple of my buddies from work (Adam Klecker and Guy Graening) climbed a peak near Yosemite. They carried with them a Ride Ataxia Banner and took pictures as they ascended the dome. This was a really cool way for two friends to show their support for Ride Ataxia.


The Dome


Adam, Half Way Up


The Dudes: Adam and Guy at the peak

Since then many of my friends, family, and co-workers have taken the opportunity to show their support. They have produced some pretty sweet pictures.


Friends and Family at Gramma Mac's 80th birthday party near Libby Montana


Family in Kellog Idaho


Me, Folsom Lake California


Brown and Caldwell, Sacramento California office

I would like to extend the opportunity to YOU. Download a copy of the Ride Ataxia Banner,take it to a sweet location (a park, a monument, in front of your house, in your easy chair, the top of a mountain), take a picture and send it to me at kyle@rideataxia.org. I'll post all the pictures here. I hope to hear from you soon!

 

 

 

 

 

 

 

NAF Board Meeting

 

On June 13 I took a trip to Minneapolis to attend the National Ataxia Foundation Executive Board Meeting. NAF invited me to attend their meeting so I could meedt the board members and talk about the future.
When I got to the airport I found out that my flight out of Sacramento had been canceled so I quickly jumped on a different flight that got me to Minneapolis a bit later than I had planned. Arnie Greutsmacher picked me up from the airport after being stuck in traffic on the way. We headed straight to the meeting (which had already started) and were in slow moving traffic the whole way. The traffic ended up to be a blessing in disguise as Arnie and I had a great conversation and shared some ideas.
We showed up to the meeting about a half hour before the end and furtunately they saved some great news for the end. Harry Orr, The Foundation's Research Director, was on the phone and he announced that the Kyle Bryant Translational Research Award was being given to Australian researchers and their British collaborators who will be investigating the catalytic antioxidant CTMIO as a possible treatment for Friedreich's ataxia (FRDA). Very exciting! For more info check out curefa.org or ataxia.org.
I had a great time meeting everyone and the greatest thing about this trip is that we are all working together to make the next ride bigger and better!

Me, with NAF Executive Director Mike Parent

The rest of my time in Minneapolis was spent checking out the local sights:

Lori and me at the Walker Art Center


Mall of America. I am not a mall person but this place was crazy, so huge that it had an amusement park inside. I had to check it out.


It gets so cold in the winter that it is very unpleasant, even unsafe, to go outside so many of the buildings are connected by skyways.

I had a great time in Minneapolis and I look forward to working closely with the National Ataxia Foundation.

 

 

 

 

Tour de Cure

 

Alright I'm going a little out of order here but this was a sweet Cycling event and we had a lot of fun.

May 6, 2007
Dad, My buddy Matt and I took a trip to California's Wine Country to participate in this year's Tour De Cure (a cycling event benefiting the American Diabetes Association) in Yountville, CA. The event has a few options, the century ride (100 miles), the fifty miler, and the twenty five miler. We decided not to push the limits since this was our first big ride since Memphis so we stuck with the fifty.
On Saturday night we stayed at our friend's house (the Grassi's) in the Napa Valley so we wouldnt have to drive so far in the morning. Thanks Mark and Jami.
We arrived in Yountville at 630am and were on our way by 730. The event has thousands of participants and it was amazing that we got registered and on our way so quickly.
The morning was a bit chilly but it warmed up in a hurry and we were reapplying sunscreen as we shedded layers. We had a slight head wind that we thought we could shake once we made it to the other side of the valley heading the other direction...no such luck. The wind seemed to be in our faces the entire time no matter which direction we were heading (we went in a big loop). By mile 20, Dad's knee started bothering him. This was a leftover pain that he started experiencing during the last week of the Memphis Ride (Dad and I are now sharing knee injury remedies). By the end of the day, Dad left Matt and me in the dust so he could at least finish before the pain got too bad. Matt and I took our time and finished strong.
Matt rides a handbike because he suffered a spinal cord injury a few years ago which took away the use of his lower body:


Matt and I love to talk crap to each other and push ourselves and each other on the bike (trike). Matt works for an organization called Disabled Sports USA Far West. DSUSA has all kinds of programs for people with all kinds of disabilities, check them out at http://dsusafw.org/. Matt is an accomplished Hand Cyclist, s@%t talker, writer and friend.

A couple more photos:

Chuggin' up hill.


After the finish...nice tan line bro.

We rode as part of a team organized through my company Brown and Caldwell. Here I am with team captain Jeff Mills and his son.


Our team humbly contributed to this event which raised over $1 million for The American Diabetes Association.

 

 

 

 

 

 

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

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.

The Ambassador Blog

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


Page 202 of 212

SHARE

FacebookTwitterLinkedInYoutube
Family C.jpg

 

Archived in
  Scientific News


 

 

Tagged in
FARA Scientific News


Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator