Success!

For the past couple of days I have been cleaning up the house, mowing the lawn, doing laundry, eating tuna sandwiches and reflecting on the past couple of months while sitting on the porch. Its been nice to relax because next week its back to work and back to the daily grind...

The conference was totally amazing. We arrived on tuesday and went out to celebrate that night. The next day I had a meeting with Mike Parent and Arnie Gruetzmacher in which we discussed what would be going on during the conference. We visited Graceland that afternoon and learned that Elvis was very rich, tacky and awesome.

Went out to dinner that night for Jina's (my sister in law to be) birthday, happy B-day Jina!

Thursday I slept in and went to the NAF leadership meeting at 1. At this meeting I met many people who were working very hard to bring support groups to their areas and to raise awareness and funds for Ataxia research. The NAF now has 61 support groups and chapters in a few different countries, very encouraging, we are not alone! You can search for your nearest support group or chapter here.

That afternoon I reluctantly went in for a hair cut. I asked around and the shoe shine guy at the hotel recommended that I go to a place called Down to Earth just down the street, so I got on the main street trolly and headed to 10 Main Street. On the way there, a lady sitting next to me had who was attending the NAF conference asked me what my green bracelet means (she knew that the blue one is for Ataxia Awareness). So I told her that it represents a cycling organization in Sacramento who raises money for organ donation (Check them out, Team Donate Life, some dedicated cyclists and GREAT people). So she knew I was a cyclist and asked "So, have you met Kyle or are you going to meet him at the conference?" That was crazy.
I finally made it to the Barber Shop, got a hair cut and had a great time BSing with the guys there. If you are ever in Memphis and are in need of a hair cut, see the guys at Down to Earth at 10 Main Street.

The Grizzlies (basketball) had a home game that night and we got a few tickets so Dad, Collin (brother), U. Steve, Roger (family friend and funny guy), and I went to check it out. Kobe Bryant and The Lakers were in town so we (mainly Roger) hecckled them all night. It must have helped a lot because the Grizzlies managed to hold Kobe to only about 60 points.


Friday was a busy day. Paul Marcott from FARA had set up a TV interview for that morning at 9 so I got to be on TV in Memphis! Some guy named Rupert from Survivor was on before me, he was promoting his new book. There was also a live band that morning. The hosts of the show were really great and I had a blast!

At 11am, I was on a panel for a seminar at the conference. That was pretty fun, I told some stories and had some good conversation with the group.


1230, go time...We had a reception and I gave a little presentation about my ride. I could have gone on for hours but I kept it to about 10 minutes. We had a fairly small room which quickly filled up so they opened up the wall and that too filled up. The room was packed with about 200 people. I am getting chills just writing about it. After I gave my little presentation, Mike Parent came up to present me with a plaque on behalf of the NAF and its members.

Here is what the Plaque says:

In recognition of outstanding achievement, this honor is bestowed upon Kyle Bryant

For his courageous 2,800 mile bike ride starting in San Diego and ending at the 50th NAF annual membership meeting in Memphis, Tennessee, to increase Ataxia awareness and to raise funds for promising Ataxia research.
The Foundation applauds your important efforts and your inspiring journey.

Thanks NAF I am truly honored.


The rest of the weekend I met many rad people who all had a common goal: Stop Ataxia. There was a feeling at the conference that was different than the previous three conferences that I have been to. There is an optimism in our community of Ataxians. Many people think that we can actually beat this thing. There is a lot of promising research going on and the main thing that the researchers and scientists need to push their treatments through is MORE MONEY. They have told us this many times and we, as a community of Ataxia families, are responding. Countless Ataxia families are organizing fundraisers which raise hundreds of thousands of dollars for research every year and it seems like new fundraisers are popping up all over the country. We are taking it into our own hands and doing what we can. What can you do to help Stop Ataxia? RAISE MONEY!

Saturday night, we had dinner, entertainment, dancing, and a raffle. The winner of the raffle donated their winnings back to the NAF.

I had a blast meeting all of you and I cant wait to see you next year.

I am not sure what the future holds for Ride Ataxia but this is just the beginning. See ya soon!

I leave you with a few pictures of friends new and old:

More to come!

I am typing this from the comforts of my own bed in Sacramento. We made it home safe and sound.

There is more to come, I want to tell you about the conference, it was a blast. Stay tuned!

We Made It!

Our easy last day turned into a long struggle to find our way on the map. However I was running on adrenalin. 43 miles on a bowl of cereal and a power bar. Friends and family were there to meet us with baloons, banners and a shower of champagne, what a finish!


I am so happy to be done and I am so glad that so many people got involved along the way.

After our arrival, we had a bite to eat and a nap then went out to celebrate.

Late night on Beal street.

Time for more celebrating and connecting with people that I have not seen in a year.

Note: Please bear with me on this one. This is a rush job and I plan to clean it up and add pictures later. It may be a little incoherent at times but here is my best shot.

This blog goes way back. 8 Days and 450 miles ago we started riding in Baton Rouge. We wanted to get a jump start on the mileage between Baton Rouge and Memphis so we rode about 55 miles through the back country of Louisiana. At one point that day the pavement disappeared and we were off road for .3 miles. Fortunately the bike map warned us of this so we were ready for it and it wasn’t a problem. After a few more miles we passed some good ‘ol boys on ATV’s. I saw something totally sweet and slammed on the brakes to take a picture, Dad was riding behind me and could not stop in time and slammed into the back of me and fell over. Dad was alright but the good ‘ol boys came to see if we were alright. We told them what we were up to and had a chat before moving on.

That night we picked up Alessandro and Adriano from the airport in Baton Rouge, took them back to the campground for a bite to eat and then took them to their hotel so they could catch a few winks.

The next day we packed up camp including 6 people, 2 bikes, and 2 trikes. We picked up A & A (adding 2 more people)at the hotel and drove an hour to the spot where we left off the day before. By this time it was about 11am and we had 55 miles to go to get to Natchez with rain threatening the whole day. Many hills later we made it to Natchez, damp and tired.

The next day we started out at the very beginning of the Natchez Trace. Years ago the Natchez Indians used this route to get from north to south in this area. This route became a known route in the area and was used by white traders, hunters, outlaws, barneys etc. The soil in the area is so soft that the trace settled almost 20 ft in some areas due to the heavy traffic over the years. Now it is a beautiful parkway with great roads and very little traffic. At one point the road surface quality was less than spectacular and we slowed down for a bit. When the road changed back again, we all let out a collective AAAHHHHHHHHHH and picked up the pace.

That night we stayed at a sweet camp ground right on the trace, there was not a hotel for miles so the A’s (Alessandro and Adriano) set up our tent and roughed it for a night. At dinner that night, we were trying to eplain the meaning of the word “stuffed” (as in, I can’t eat anymore, I’m stuffed) to Adriano. This explanation lead to an attempt to explain the meaning of the most ambiguous word in the English Language “stuff.” That was pretty funny.

The next day we got an early start right from the campground. Before we even got out of the site we discovered that I had a flat tire. So we sent the Italians ahead with a copy of the directions while we fixed the flat. It took 4 tries (you’d think we would have this figured out by now) but we finally got the air to stay in the tire. And we were off… About ten miles in to our travels we encountered a 4 way stop. The directions called out this intersection but did not say which way to turn. The next direction was a right so we turned right (does this even make sense?). About 2 miles down the road we figured out that we were on the wrong road so reluctantly we turned around (this was the first time we had backtracked since day 1). When we got back to the 4 way stop, we found Alessandro and Adriano, lost as well, they went the wrong way right out of the campground. Luckily we ended up at the same place and when we finally figured out which way was up, we continued on reaching Vicksburg, MS by about 4pm on a day that was supposed to be a short one.

That night Alessandro informed me that he and his caregiver, Adriano had decided to travel alone. In the morning, Alessandro, Adriano, Dad and I sat down to figure out what needed to be done. In the end we all decided that we (Dad, Steve, Mom, Wally, Mary and I) needed to continue on to reach our goal. So we parted ways that morning.

The next 3 days were a blurr. 55 miles then 65 then 35 and today was another 60. Smooth, flat roads with very little traffic on the Mississippi River Trail, smooth sailin’.

Today we quit biking about 60 miles south of Memphis and we are staying about 25 miles north of that. We set ourselves up to have a couple of easy days (25 mi and 35 mi) to cruise into Memphis. A few good friends are going to show up tonight, Jim, Kim and Kele Dobrinski and Lyle and Joyce Miller. They are going to help us celebrate as we roll in!

As we count down to the end of this trip, I want to draw attention to the goal of this crazy adventure. The main goal has always been to raise awareness for Ataxia which is a huge part of my life and the lives of many others. Amother goal of this trip has been to draw attention to the many research projects that are aiming to better understand the cause of this disease.

The outcome of this trip is beyond my wildest dreams. The following is an excerpt from a recent Friedriech's Ataxia Research Alliance and the National Ataxia Foundation:

The National Ataxia Foundation and Friedreich's Ataxia Research Alliance will establish a Kyle Bryant Fund with matching grants to provide $100,000 for preclinical Friedreich's ataxia research. Details of that effort will be announced at a celebration honoring Bryant at 12:30 p.m. Friday, March 23, in Heritage I at the Memphis Marriott Downtown hotel, 250 North Main Street.

The amazing thing is that these two organizations are combining their knowlege and drive to work together to "stop Ataxia."

Gettin' There

Wow, its been a while! We have covered about 200 miles since my last post and we are now in Greenville, MS.

After three days of riding with the Italians, Alessandro and Adriano, they have decided to travel alone and we parted ways this morning.

We have had some great days through the countryside and backroads in Mississippi. We cycled through about 55 miles of the Natchez trace which was just about the most beautiful place we have been. We got lost and found our way again on a day that was supposed to be a short one. Today we had another beautiful day near the Mississippi River and we are now watching barges go up and down the river out the window of the Desert Fox. Chuggin’ along. We have a rough plan for our approach which includes about 250 miles in 5 days, should be fun...

New Orleans

We arrived in Baton Rouge a day early (last wednesday) and we have been enjoying our rest. Meeting new people and seeing lots of sweet stuff.

On Thursday March 8 (Mom's Birthday) we did some sight seeing because thats what Mom loves to do. First off, we visited the LSU campus here in Baton Rouge. Very nice campus, huge stadium that seats 91,600! I wanted to get an LSU hat so we stopped at what we thought was a gift shop thing that ended up being the LSU sports museum. This place was insane. It was in a smallish hall, jam packed with photos and exibits including one of Shaq's game shoes and a pair of Pistol Pete Maravich's game shoes. To add to the atmosphere, LSU fight songs were being played in the background at top volume. We met a very nice guy named Tom who gave us a tour and got out the old Tiger's head for me to take some pictures, haha that was sweet.


Then we went to the capitol building, to the 27th floor which gave us a spectacular view of Baton Rouge and the Mighty Mississippi (Muddy Waters, Old Man River, whichever you prefer).

That night we had dinner at this Cajun restaurant and heard some great Cajun music, Jay Cormier & Cajun Country. We had a great day, happy B-day Mom.

The next day we got up early (530) and drove down near New Orleans to take a swamp tour on an air boat. This tour was great, the swamp boat could go anywhere and we saw many gators, swamp rats, egrets, ducks etc.


The guy who gave us the tour was pretty funny, a true Cajun, he had been in the swamp his whole life. He talked so fast that we could barely understand him. He said: "People tell me that I talk too fast, I say no, you listen too slow." Lame joke but hearing it from him was pretty funny.


After the tour we drove to New Orleans to meet with Dr. Ed Grabczyk, his team, and some fellow Ataxians in the area.

Dr. Grabczyk's research as I understand it:

Dr. Grabczyk and his team are trying to construct a cell that will behave like a cell affected by FA. They are constructing these cells so that they can test chemicals to see if the chemicals can slow down the disease. The DNA in the cells will be equipped with a little code that will tell the cell to glow in the dark if the chemical is beneficial, I'm not making this up. These cells will hopefully lead to a technique in which many, many chemicals can be tested at once and they will initially be able to tell if the chemical is beneficial just by looking for glowing cells. This is not a very good explanation, but thats how I understand it. LSU research folks, help me out here.

The cells are kept in freezers at like 200 dgrees below freezing. During Hurricane Katrina, Dr. Grabczyk lost all of his work due to power failure. His lab had to start over and they are still not at full capacity. As you might be able to imagine, it was extremely difficult to see all that progress go to waste. However the lab is almost back to where it was before the disaster and Dr. Grabczyk said "It is important to keep a sense of humor in the face of disaster"...some Ataxians might be able to relate.

We had pictures and an interview with the New Orleans Times Picayune.

After our lab tour, we hung out with our fellow Ataxians and took a few pictures. Nice to meet you all, see you soon, hopefully in about a week and a half.


Today we took a stroll in the french quarter and heard some more great Cajun music before we headed back to Baton Rouge.


Tomorrow we will finally be on the road again. We will have a short day, we will probably travel just past St. Francisville before returning to Baton Rouge to pick up Alessandro tomorrow night.

Additionally:
Please re-visit the previous post "The Italian." I added a large section...do it!

The Italian

On September 19, 2006 I received an email that went like this:

"Hye, my name is Alex, I'm 25 years old and I live in Italy.

I am an handbiker. I am the only one in Europe with AF that races.

I just made a team. http://piccolidiavoli.it the small devils 3wheels.

Every saturday or sunday I have a race. I am a good handbiker...

I have races in Italy and in Europe. I like it.

I have read of you on Internnet, what you will do is great!

I want to do the same thing in Italy. How is it possible."



Alessandro will be in Baton Rouge on Sunday and we will ride over 400 miles together to Memphis.



Check this out: I copied this from an email I received from a group called FA_babelFAmily. FA_babelFAmily was created to help cross the language barrier for FAers and their families. Posts on this group are translated into many different languages. This group has been very supportive and I can't thank them enough! Visit FA_babelFAmily here. Below is a short message from the creater of this group, Gian, followed by a message from Alessandro and an interview. There are more pictures that accompany this interview which can be found on the FA_babelFAmily site. This is a long one, so you might have to split it into several sections if you are actually trying to get stuff done today. Enjoy...

Dear friends,

I called Alessandro Villa last week to wish him a happy birthday and to tell him that I wouldn't be able to come to the party on the 3rd March. I also suggested we meet up before he left for his Ride Ataxia and so we arranged to meet up at 9 in the evening on Monday. I asked him if it would be possible to interview him and he said yes. He also offered to write a little self-presentation of himself, which you will find below, in order to draw a better picture of himself and his life.

I was deeply impressed by Alessandro’s personality. His firm determination to fight FA and his noble character motivated me even more to focus my energy into the project on which “FA_babelFAmily” is based.

With time, the idea to reach all those affected by Friedreich’s Ataxia in and outside Europe seems to me less and less utopian. The encouraging news on the current progress in FA research, together with the growing cooperation between European and American associations and the various fund-raising events, deserve to be passed around now more than ever. For this to happen, however, it is necessary to try and overcome the language barriers. It is a challenging task, but we are doing our best and with good results. The meeting between Kyle and Alessandro is the most outstanding proof of it.

Kind regards,

Gian Piero

A MESSAGE FROM ALESSANDRO

My name is Alessandro Villa, I’m 26 years old and I live in Monza, Italy. I’m affected by FA*, its first symptoms appeared when I was thirteen…

*Friedreich’s Ataxia (FA) is a degenerative disorder of the nervous system for which, at present, there is no known cure. The term “ataxia” comes from the Greek “ataxis” meaning “without order”. In medicine, it is used to describe the lack of muscle coordination. The person affected by ataxia loses harmony of movement.

I live every single day, savouring all the pleasures, never worrying about anything. I have a wonderful family and two children who represent my serenity, and the living proof of my great achievement, but I also have a weakness which is slowly becoming both a big passion and an important adventure: hand-bike.

I never give up in front of difficulties, always believing that I can manage everything I intend or want to do. No-one better than those who share my condition, know how true the old saying is: “Where there’s a will, there’s a way!”
I consider myself an athlete, possibly the only one in Europe with FA. Despite my condition, I take part in national and international competitions, marathons and events.

I have founded a sports non-profit association called “PICCOLI DIAVOLI 3ruote, www.piccolidiavoli.it, enrolled at CIP, Campionato Italiano Paraolimpico (Italian Paraolympic Championship), whose objective is to promote sport as a therapy for the disabled and to demonstrate that nothing can stop the will and the joy to live!

It is possible to support us by:

􀂉 cheque, made to Piccoli Diavoli 3ruote Ass. Sportiva Dilettantistica ONLUS

􀂉 bank transfer to current account number: 77426799 ABI 7601 CAB 01600 CIN P

Hand-bike riding has given me three major gifts:
· Opponents who always motivate me to outdo myself and who, once the competition is over, are friends to share the same passion with..
· Personal rewards in sports competitions. Trophies, medals…
· A well-trained, defined, strong and flexible body, which makes me ready to fight my disease.

Alessandro Villa

When riding in Italy, my main goal is to promote community awareness of the need for rehabilitation and active placement of FA people.


INTERVIEW WITH ALESSANDRO VILLA BEFORE HIS DEPARTURE FOR RIDE ATAXIA
supporting Friedreich’s Ataxia research

Milan, March 5th, 2007

GP - Alessandro, we know that you are about to join Kyle Bryant (www.rideataxia.org) and that together you will cover 770 kilometres from Baton Rouge, near New Orleans, to Memphis, Tennessee, where you will attend the national meeting of NAF (National Ataxia Foundation) (http://www.ataxia.org/). How did you hear about Kyle’s project?

Alessandro – It was last September, through an email that I received from FA_babelfamily.

GP – When are you leaving? What’s the motivation behind such a challenge? To have fun or what?

Alessandro – I’m flying out next Sunday, march the 11th, from Milan. The return flight is for the 25th of March. Fun has definitely a role in it but mainly I have set it as a challenge to myself and to FA.

GP – Will you be able to keep us posted while in the States? You could do it through Kyle’s blog (www.rideataxia.blogspot.com) or by writing directly to all the people on the mailing list…

Alessandro – I’ll bring my laptop and a triband cell phone. The hotels will have a wireless service so if anyone would like to write to me, I’ll be happy to answer. My email address is alessandro@piccolidiavoli.it. My MSN account is alexvy@email.it for those who’d like to chat. Remember the time difference, though! Obviously, I’ll also be able to give updates directly through FA_babelFAmily or through Kyle’s blog.

GP – Will you leave alone or will there be someone with you?

Alessandro – Adriano Mella, my trainer, will be with me. His wife is disabled and she competes against me in the sports association for disabled called “GCS Giamebenini”, in Verona, Italy. (http://www.gscgiambeninip.it/) They advised me to found “Piccoli Diavoli 3 route” and have supported me a lot.

GP – When you decided to go and join Kyle, how did your family react?

Alessandro - At first, Francesca, my partner, wanted to follow me but I convinced her not to because it is my disease and it is a challenge between me and FA. Francesca will stay at home with our two kids, Chiara, five years old, and Andrea, two and a half years old. Just thinking of them will give me the strength to overcome the most difficult moments.

GP – Would you have liked to join Kyle for the whole 4,800 km trip, from San Diego to Memphis?

Alessandro – Sure, but because of my job and my family, I couldn’t do it.

GP – Have you thought of riding with Kyle here in Europe in the future?

Alessandro – Yes, I thought about it but I haven’t discussed it with Kyle yet. I’ll tell him when I see him. Europe is beautiful and it would be a great place for an “encore”.

GP – Ride Ataxia is currently widely covered by the media in the States and, as a consequence, there is a growing awareness on ataxia, especially on FA. Do you think a similar event, with the same response from the media, could be organized here in Italy, or in Europe in general?

Alessandro – It could be organized. I’m not sure about the response of the media, though.

GP – Do you think you’ll get a warm welcome at NAF’s annual Meeting in Memphis?

Alessandro – To tell you the truth, I do. FARA (www.curefa.org) has already issued a press release about my arrival.

GP – You stated that you will donate the funds you will get from Ride Ataxia to FARA (Friedreich’s Ataxia Research Alliance). Kyle has foreseen a common funding for FARA and NAF and I imagine you will back him up. How much have you managed to raise so far and through which events?

Alessandro – I haven’t had the time to organize anything important so far. When you lack a sponsor, it’s difficult. It’s the first time that I take part in a charity project and, unfortunately, here in Italy I’m alone. Anyway, the little I’ve raised is already something, considering I’ve done it all on my own. I do hope that this trip will prove to be a useful experience for me to better organize the next event and its fund-raising aspect.

GP – A person with a serious condition riding for hundreds or thousands of kilometres is something you don´t see everyday. Many people affected by FA wouldn’t even imagine achieving such a feat. How can this be possible for you and Kyle?

Alessandro – I always say: when there’s a will, there’s a way. It’s the only answer I can think of…

GP – Who supported you most in your wish to participate in Ride Ataxia?

Alessandro - GSC Giambenini (http://www.gscgiambeninip.it/ ), Maddiline Cycle (http://www.maddilinecycle.com/), MGE UPS Italia (www.mgeups.it) and Sporting Club in Muggiò (http://www.sportingclubmuggio.it/homepage.asp) helped me with the organization and gave me technical support. FA_babelFAmily (http://health.groups.yahoo.com/group/FA_babelFAmily/) offered me moral support.

GP – When planning your trip, did you contact any Italian association involved in Friedreich’s Ataxia?

Alessandro – Yes I did.

GP – How did they respond?

Alessandro - No comment!

GP – Federico, your brother, is himself affected by FA and will leave shortly for Australia where he’ll take part in an international hand-bike competition. How come he is not following you?

Alessandro – Because he is not ready yet, physically, to cover 100 kilometres a day.

GP - I work with MariLuz González on a daily basis and she asked me to convey all her gratitude and admiration for what you are about to do. She would also like to ask you three questions:

- Do you think it will be hard to ride in the States?

Alessandro – I thought about it and I’ve packed lots of waterproof garments. From what I hear, the trip from Baton Rouge to Memphis should be flat. At least thats what I hear!

- In your opinion, what could be done to promote sports with the disabled?

Alessandro – There should be more events both for amateurs and pros. And this is exactly why “Piccoli Diavoli 3ruote” was founded.

- When did you start practicing this sport and how?

Alessandro – Riding a mountain bike is something that I’ve always liked, since I was a kid. Three years ago, when I was twenty three, I discovered the hand-bike, a bike that you can ride without using your legs. Since then I’ve realized that being fit can help you fight FA. And now I’m ready to prove it.

GP – Do you feel physically ready to cover 770 kilometres in seven days with your hand-bike?

Alessandro – Not yet. I see Ride Ataxia mainly as a beautiful trip, a mad one, if you want, but not as a competition. It will be useful to me as a training for the 2007 sports season.

GP – I’d like to close this interview with the following question. You’ll be leaving in a few days. What’s stronger, the impatience to leave or the excitement to leave?

Alessandro – What is stronger is the joy to go back to the States after so many years. You know, it was in the States, in New York’s Central Park, that I learned to cycle when I was five years old!