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Day 10
Tehachapi to Boron
49.99 miles

Today we got a little break, downhill all day. We started in Tehachapi and the Tehachapi News met us for a picture.

We had a few miles in the flats and then it was downhill for the rest of the day. We had a strong headwind but we powered through it with gravity in our favor. We completed 18 miles before our first stop and 33 miles before lunch. We cruised into Boron with energy to spare.

Fun Fact: Boron is home to the largest Borax mine in the world.

We will have another trike joining us tomorrow. This is Sam. Sam is getting over a gnarly cold and did not ride today. He will join us with fresh legs tomorrow. We are stoked to have another FA'er on our team.






First of all...a couple business items: Last week we hit the $80,000 fundraising mark and I was confident that we would be at $90,000 by the end of the week with a good shot at $100k. Well, I am very excited to announce that we have passed the $100k mark and our total is still on the rise! Thank you for your support!

Also we have added a few teammates. Bart Rupel and John Lockwood have joined us as cyclists and Bart's Buddy Tim has joined the SAG team. We have also added our Seattle crew as cyclists Sam, Max, Tom and Amy. Our team is growing and getting stronger. We now have 17 cyclists!

Day 9
Bakersfield to Tehachapi
36 miles
3500 foot climb

Thus far, my posts have not featured much cycling. Well today was all about cycling. We only rode about 36 miles but we climbed 3500 feet.

We started out on the outskirts of bakersfield and clicked off 9 miles in the flats.

Travis and Mike checking out the mountain

Then we started the climb. We climbed for about 5 miles at a 5% grade before any downhill. I was not a speed demon at 3mph but I just geared down and cranked it out. We had a spectacular view of the vally floor on the way up the hill and we had a long time to chat as we stared at the rolling hills as they passed at 3-4mph. When we hit the first downhill we let 'er rip and hit the top speeds of the whole trip so far. I think John Lockwood had the top speed of 42mph. We had one more small climb then it was downhill to the lunch spot. At lunch we had a decision to make, stay on highway 58 or take a side road. We found out that the highway cut out about 5 miles and has a much more gradual grade than the side roads so we decided to stick with the highway. The group in front of us left before us and went with the map on the side roads. They had much tougher climbs registering more than 10% at one point. In the end we all decided to stick to the highway for the rest of the trip(as long as it is legal and safe). Highway 58 actually has very generous shoulders and as far as I know, cyclists are legal.

We finally reached the summit and our hotel was about a block away...success! Our team had been dreading this day since the beginning and we all made it with no injuries!





The hours are passing like minutes. We must be having a lot of fun! I really n eed to get to bed in preparation for the big climb to Tehachapi tomorrow so I am going to make this short...bummer, I could spend a few hours here telling you about all the stuff that's going on. Also, my computer died tonight so tyhe posts might be few and far between from here on out (I am using a computer in the lobby of our hotel).

Day 6
Hanford to Wasco
57 miles

The rad stuff about this day happened off the bike. A local guy John (sorry John, I don't know your last name) provided our dinner at a local park. He and his people barbqed some killer carne asada and we had fresh tortillas. It was really nice to be taken care of by some great people, thanks guys.

Day 7
Wasco to (a little past) Bakersfield
45 miles

We added a few miles to this day so we could subtract from our climb day tomorrow. We also added a few teammates: Beth, Eric and Edie.

Today, once again we were taken care of by a local group. This group is driven to help out by a great young man named Jarod. Jarod was diagnosed with FA a few years ago and is surrounded by a great group of people who are driven to find a cure. They have an event of their own (5k & 10k walk/run) coming up on April 6 and they invite all to join the fun. For more info contact me.

Sean, Jarod, Me

Bonus Picture:







Days 4 and 5


First of all check out this short article that was in the Sacramento Bee the other day:

Day 4
Madera to Fresno
25 miles

Day 4 was a short day. We took it easy and had a nice team lunch courtesy of Outback Steakhouse. They fed us great food and we didn't have to clean up!

Me and Sean at Outback

We met another ataxia friend at Outback. This is Mike Betchel and his Mother Beth. Mike and I met at the NAF annual membership meeting in San Diego a couple years ago. Mike has an undiagnosed type of ataxia and he was diagnosed at age 2. Undiagnosed means that clinically the diagnosis is ataxia but the gene marker has not been discovered for this type of ataxia.

That night we stayed at the People's Church in Fresno. They were gracious enough to let us use their showers and we had a roof over our head for the night. The best part is that we saved some cash by sleeping on the floor!


Day 5
Fresno to Hanford
49.75 miles

I dragged along for 50 miles today. My legs were aching by mile 10 and would not quit. I could not sustain a speed of over 10 mph for more than 15 that was pretty frustrating. It felt like my brakes were on the whole time but I checked and rechecked and everything was cool. I guess I was pretty tired and maybe I didnt eat enough this morning. Another factor is that I put a new seat on my trike last night and it may have changed the configuration enough to make a difference. Either way, I made it. So did everyone else and they all had less trouble. Other than a crash resulting in minor scrapes and bruises we are all safe and well.

We had dinner at Ryan's Place right by the hotel.

And then we went out to a local ice cream shop. There is a faint smell of Dairy everywhere in this town so the ice cream was pretty fresh...mmmmmmmmboy!

This is a small scoop!









Long Day

Day 3
Turlock to Madera
65 miles

We woke up this morning at the lovely Travelodge in Turlock. Loaded up the SAG vehicles and headed to the spot where we left off yesterday.

Sean at the starting line with his St. Patrick's Day bling.

Started out heading South right next to the railroad tracks. As a train passed, I gave it the "blow your horn" signal and he nearly blew us off our bikes, it kinda freaked me out. So we rode next to the tracks for about 30 miles today and there was not much shoulder but the motorists were mostly courteous.

We traveled in three groups for the most part today. Group 1: Sean, Travis, Mike, Luke, Tess Group 2: Me, Mike B., Uncle Steve, Collin, Jina, Libby, Neal Group 3: Andy, Linda, Spinner, Angela

Group 2 and 3 traveled together for the first 25 miles until lunch. We passed this sweet Aviation museum. Check out Collin and Jina looking tough in front of the SR71.

At lunch we were standing around laughing at something and all of a sudden we heard what sounded like a fire cracker. Uncle Steve jumped as something hit him in the back of the leg. It turned out that a hole had blown in his tire and we are guessing that it was because of the warm afternoon sun. We had plenty of spare tubes and luckily he had one spare tire because that one was a gonner. So we all stood around and watched as Uncle Steve gave us a free lesson about replacing a tire. We all agreed that he was lucky that it didn't happen on the road.

After lunch we still had 40 miles ahead of us through some rough orchard lined roads and at one point we got a little confused at the corner of Road 24 and Avenue 24.

The first group came in at about 4pm, the second 5pm and the third group came in with daylight to spare at 6pm. Long day on the road and everyone was still smiling, we really are having a lot of fun. We took care of our sore muscles in the pool and the hot tub. The pool was ice cold so we waded up to our knees for a nice ice bath.

Then we relaxed the soreness away in the hot tub...what a life.

Nice jersey tans!

In general, everyone feels a lot better than they did yesterday, much of the knee pain is going away and we are figuring out how to avoid it in the future...onward to a cure!





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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