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Ride Ataxia Around The World

 

Check this out. This is a snippet of an email from a friend of a friend who wanted to contribute to the awareness effort, thanks Brent:
"Right now I’m in Thailand; I’m staying in Pattaya (the world’s biggest brothel) and working in Sriracha....
There is plenty of shopping and plenty of restaurants to check out if I had the time – you should see the size of some of the lobsters and shrimp that they have here!!! The tailors are hilarious, they stand on the sidewalk and ask to shake your hand and if you do they immediately want to show you their wares, but become annoying after like the 5th one – however you can get a custom tailored suit for like $100 and they’ll do it in about 24 hours or less!"



 

 

 

 

 

 

 

 

Ataxia UK



I was randomly searching for Ataxia stuff today when I ran across this video from the Ataxia UK site. This guy Darran lifted 10 tonnes in 10 hours and raised 10,000 pounds for Ataxia UK. Good stuff, click here to watch the video.


Planning

 

 

I know I have been promising details for a while now. Well, I will keep you in suspense for a bit longer. Our team met tonight to put together the details. These dedicated few have been working very hard to arrange accomodations, plan a route, solicit donations, create promotional material and create awareness. We will have cyclist information packets in one week which should include all the information you need to plan your Ride Ataxia adventure.


Our team (left to right):
Top: Mike Bryant, Sean Baumstark, Cole Hendricks, Andy Smith
Middle: Me, Diane Bryant, Kristine Strobin-Smith
Bottom Right: Tess Kretschmann

 

 

 

 

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:

 

 

 

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.

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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!


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