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Research Funds


After a little vacation from Ride Ataxia I have had time to reflect and begin to plan next year's event. No details yet but the ride will go on in late March 2009. But lets not get ahead of ourselves here. We are still celebrating our success from Ride Ataxia II. And a huge success it was!

Money kept rolling in until a couple weeks ago and our total now is $135,000! That is unbelievable! This huge number is due to the fact that we had so many enthusiastic team members who were fund raising machines. We had 42 registered participants and 50 cyclists the first day, everyone pitched in to make it happen.

The success story does not stop there. The National Ataxia Foundation and the Friedreich's Ataxia Research Alliance are going to announce tomorrow (Monday, Cinco de Mayo) that they are going to contribute equal amounts to bring our total to $250,000 (one quarter of a million dollars)! This money will be used to fund two $125,000 research grants. The Request For Proposal (RFP) and Application for the grants will be available on either of their websites (, and I will link it here too.

The grants will target "translational research." Research that seeks to take a treatment from the laboratory to ataxia patients like Me, Sean, Spinner, Linda, Sam and Beth just to name a few. These grants are on the fast track to be collected, reviewed, awarded and distributed by August 2008. We are getting money to the researchers as fast as possible. More details will be available in the RFP.

This is absolutely incredible how it has all come together. Our team had a lot of fun raising a ton of valuable research money and we are grateful to be collaborating with two great organizations.



We Made It!


It has been a crazy day and I am desperately in need of some shut eye.

The climb yesterday was not easy. 18 miles at 4% grade and then a 7 mile downhill nd then another 7 miles up at a 4-5% grade. We climbed over 4,000 feet in 32 miles. (During this trip we climbed over 8,000 feet!) Then it was downhill to finish the 50 miler.

This morning we left at about 730am from Primm Nevada. We left so early because we needed to get to the Flamingo no later than noon. It was an easy 39 miles and we arrived ahead of schedule. We gathered about a mile from the hotel then cruised as a group (21 of us) into the hotel. It was pretty powerful to travel with the team, taking up a lane along a busy street amongst these huge hotels.

When we got to the Flamingo we had great support from many Ataxinas, families and researchers. The NAF did a great job orgasnixing the event. Check it out on Las Vegas News 8. (there's a video to the left of the page)

I appologize that the blog is not the same as it was last year. The ride was way more intense this year and it left me with no time or energy at the end of each night. Last year there were only about four of us and I could spend all night writing a blog. This year I was busy enjoying the company of my teammates and then getting up early every day to get on the road. This year we had no rest days so we rode through pain and fatigue. I left out a lot of details but you can be assured that we had a lot of fun and made a huge impact. For now our team gets to bask in the glory of our victory and we look forward to our next challenge...stay tuned for updates about the research that we will be funding.



Nearing the Finish Line

I screwed up in the last couple of posts, I numbered the days wrong but this post is back on track.

Day 10
Boron to Calico
55 miles

Day 10 featured a new trike on the road and he (Sam) did great.

Most of the day was flat and easy until we got on highway 40 heading east. We started flying because we had a nice wide smooth shoulder. Then all of a sudden I lost all power on my trike, my cranks started spinning freely and I realized that the master link had come loose and my chain had fallen apart.

So I slowed down and apparently I stopped too fast which led to a pile up behind me. Collin hit Dad, Jina hit Collin and fell partially into the road. She was still hooked in to her pedals so I grabbed the wheel of her bike and helped pull her out of the road. She survived with nothing but a few scrapes and bruises and I plan to slow down more gradually next time.

Back to the masterlink: This has happened before and it is no problem as long as we can find the masterlink (I think I just like using the term "masterlink"). One piece of the link was still in connected to the chain but the other piece had fallen off. So we had to scour the shoulder of the freeway to find a tiny piece of metal amongst all the other tiny pieces of metal and bits of tire and dirt and broken glass and cigarette butts that reside on the shoulder of the freeway. Miraculously sean spotted the tiny piece after two people had already passed it by. So after a bunch of grunting, sighing and heavy breathing, we wiped our greasy hands on our shirts and continued pedaling. The freeway was great, I hit a top speed of 31mph and we cruised for about 10 miles. Then we took the offramp and headed toward Calico Ghost town. A tough 3 mile climb to end the hot day...

This town was a silver mining town from 1880 to 1895 and now is a museum.

Tess on the Jack Hammer

We had a team meal at the on site RV park

Feeding frenzy (a hotdog never tasted so good, actually three hot dogs never tasted so good)

And we stayed in the bunk house

Collin and Buford waking up in the morning, 830 am start every day

The view from the porch of the bunk house

Day 11
Calico to Baker
55 miles

Today we took off from the bunkhouse and immediately headed downhill hitting top speeds for the trip, for me it was 32mph. We turned left onto a frontage road and the tailwind was spectacular, we cruised at 18mph for about 5 miles. Then the road started to get rough, so rough that I was afraid my trike was going to fall apart. By mile 14, we found out that there was a bridge out ahead so we hapily opted for the freeway against the advice of the signs that said no cyclists. As we were cruising at 20+ mph a CHP car passed us so we figured we must be ok to travel on the freeway. We cruised so fast that we beat the lunch wagon to the halfway point. A quick tuna sandwich and we were back on the road. The wind switched on us in the afternoon but it kept us cool in the desert heat. We had a few short climbs but it was mostly downhill. We reached the motel at about 2pm and everyone jumped in the icy water at the pool, our personal Oasis...

Tonight we are staying in the town of Baker, home of the tallest thermometer in the world, it read 83 when we rolled in.

We ate at the legendary Mad Greek Restqaurant, good stuff

We will climb 4000 feet in approximately 35 miles and then cruise downhill into the town of Primm after crossing into Nevada, the silver state. We are all feeling pretty good for the most part. Sean's ankles are really tight and swolen and he has been bearing the pain for the past couple of days. He is confident that he can make the climb tomorrow.

The heat is becoming more of a factor as we go farther into the heart of the Mojave desert so I think we will start earlier tomorrow so we are not climbing at the peak of the heat.

We arrive in Vegas at the North lobby of the Flamingo at noon after traveling 39 miles from Primm that morning...Stay tuned.




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.

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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.

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