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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!

 

 

rideATAXIA: Louisiana

 

So a few days ago we finally crossed the border into Louisiana.

That night we had a little celebration with the customary map burning after 25 days in the Lone Star State.



The next day was an easy 50 to Kinder, LA. The terrain has been flat and the shoulders, for the most part, have been wide and smooth since the border. We were careful not to go too far off the road into the swamp that surrounded us.

This was David's last day in the saddle so he led us in for the last ten miles. It was great to ride with you David, I'm glad you made it out.

David (Spinner)

We got in early that day so we played some shuffleboard at the RV park...


The next day, we changed our route slightly so we could make it to Baton Rouge a day early. We took hwy 190 east and the shoulder was nice for a while but it disappeared at one point and we had to put our trust in our fellow human beings, that they would be paying attention...It worked out for us. As we slowly passed the Louisiana countryside we kept seeing large fields filled with water and reeds sticking up. Every ten or so feet there were the tops of what looked like some kind of trap. Then we saw some guy in a boat in this field.

We found out that these were craw fish fields and this dude was harvesting crawfish. Welcome to Louisiana. We ended up in Opelousas, LA and we stayed at the city park right next to the ball field, classy.

Side note: We have seen an unusual array of roadkill lately. Cats, dogs, snakes, frogs, turtles, rabbits, armadillos, opossums, hawks, a coyote, and a bobcat. Just thought you'd like to know.

Today we continued on route 190 and ran into a sketchy situation. There was a fat causeway for about 5 miles. The causway had 2 lanes in each direction, a 3 inch shoulder with a concrete barrier on the edge. We considered calling the sag wagon to bypass this mess but we just went for it. Head down, big chain ring, crankin'. Dad folded up his mirror because he said he didn't want to see it coming, it being a large truck running him down. So we cranked as hard as we could in the middle of the slow lane for 4.25 miles with cars and trucks passing at 65 mph to our left, Im pretty sure my leg has never felt a burn like that. Dad said there was quite a "pucker factor."

We are now in Baton Rouge. We have been on the road for about 6 weeks and a few weeks ago I thought this trip might never end. Now that I can taste the finish, I am not sure that I want to stop when I get there. Having fun and crankin' along.

We will be chilling in this area until the 12th. On the 9th, we will take a trip to LSU in New Orleans to visit their Ataxia research labs and to meet some Ataxia friends in the area. If you are in the area and would like to attend, let me know and I will give you the details (kyle@rideataxia.org).

 

 

Uncle Steve Chimes In

 

Kyle has invited me to be a guest blogger . Hey thanks Kyle.

I came to this ride with no expectations, because I’d never participated in a road ride of this sort. Well it’s turning out to be a great experience. Once you get used to the cars flyin by, the riding becomes a lot of fun.
The best part of this trip is the fact we I mean I really don’t have to do anything , but ride all day and eat a lot of food.
Kyle doesn’t get to relax near as much. He is constantly preparing for the next reception, or answering calls and e-mails from well wishers.
The amazing thing I see happening is that because of this ride Kyle is becoming a source of hope for many ataxia sufferers and their families. When seen first hand how F.A. , or other Ataxia, affects the body you can understand how many people would just give up and let it run its course. As Diane would say “that aint happenin with the Bryant family." To see Kyle, Mike, and Diane give so much to make this ride, for Ataxia research, a success is truly VERY COOL.
On the lighter side……. I want to give a tip of the bike helmet to the crew @ Tour of Nevada City bike shop. They donated a large quantity of a product called “chamois butter”. Two packets of this stuff in your bike shorts each morning and it’s smooth sailin all day long.
Hi to all the folks @ Turner Mtn. I’ve decided to stay for the whole ride so I won’t be back in Libby till the end of March. Save me a few lines of the good stuff.
Also hi to the wed. nite Mtn. bikers. I’m gettin into ridin shape early this year. So lets do something really hard on our first ride.
Last, but most , hi to Mom, Carson, Aren, Ashley, Mike and Kasen ,who is almost 8 mos old. as of this blog. Take care, love you guys.

ONWARD TO MEMPHIS THIS RIDE RULES

slb

 

 

 

 

 

 

 

 

The last few miles in Texas

 

I have not been able to write very frequently lately because there is so much going on. Since Feb 25 we have been traveling with 8 people, 2 rvs, and a full size van. We have 4 riders and this morning we picked up one more for about 15 miles.

Since San Antonio (feb 24, 25) we have seen a little of everything. The first day we rode on a narrow highway with no shoulder and a very rough surface, not much traffic which was the saving grace. The next day we started in Bastrop, TX and rode through two parks for 18 miles off the beaten path. We encountered some steep hills in the parks that I could not handle with one leg so Dad or uncle Steve had to jump off and push for a bit. Back on the highway we had another stretch of no shoulder and ended up in La Grange, TX that night. The next day (Feb 27) was full of more hills and shoulderless travel. In the middle of nowhere among grassy grazing land, we came across a guy on a bike heading the other direction. He pulled over to talk and we saw that he had packs on the front and back of his bike, it looked like he was on quite a journey himself. He had started in Ft. Lauderdale, FL and was headed to San Diego. Very nice guy, his name was Dave (not surprising as we have met a total of 9 Daves on this trip so far).

You can read about his journey at http://palmerlandtrust.org/Daves%20Ride/index.html.

That night we stayed in a tiny RV park in Navasota, TX. We circled the wagons to avoid the wind. Wally fired up the bar b q for some incredible barbq chicked and we all sat around and enjoyed the incredibly nice weather.



Side Note:I can not say enough for our support team on this trip. Wally, Mary and Mom have worked tirelessly to find us places to stay, drive us around, and cook for us among many other things. Its crazy to move camp every single day, I don 't recommend it for the leisurely traveler. This trip would not be going as well as it is without this team.

The following day was a short one, 32 miles and we ended up in Conroe, TX just North of Houston.

The Albert B. Alkek Institute of Biosciences and Technology

On March 1 we took a side trip to IBT in Houston where we met a research team who focuses on Friedreich’s Ataxia and other triplet repeat (GAAGAAGAAGAA) diseases. First we met Marek Napierala and Albino Bacolla. Marek and Albino took us on a tour of their lab and tried to explain what they are doing. They did a very good job translating between Science Speak and Lame-o Language.

Marek

As I understand it:
DNA is a sequence of codes that tells the body how to make the proteins and other stuff that we need. Messenger RNA decodes the DNA and reads the code. Friedreich’s Ataxia is caused by a long repeat at a certain point in the DNA, the repeat is GAAGAAGAAGAA. If there are too many repeats, the messenger RNA gets confused and does not make the right ingredients for normal operations. This confusion results in a lowered level of the Frataxin protein in people like me. A lack of Frataxin screws with Iron levels in the blood and causes me to spill my Martini and stumble down stairs.

So Marek had an idea a few years ago, he proposed that if they could shorten the number of GAA repeats, they might be able to increase the amount of Frataxin that is produced. This idea is being investigated as a collaboration between this team and two other research teams including the Lab of Joel Gottesfeld who we met at Scripps in San Diego. Marek, Albino please feel free to leave comments to correct me where I failed to get my facts straight.

Side note: That day Marek got word that he would be receiving a generous grant from the Friedreich’s Ataxia Research Alliance. He also told us that he recently received a grant from the National Ataxia Foundation. These two grants will fund his projects for the next two years! Also, Marek did not toot his own horn but we found out that he was named Young Investigator of the Year by NAF.

We also met Dr. Bob Wells who started this research institute and is a huge force in the fight against triplet repeat diseases. Bob gave us a brief history of the institute and a signed copy of his book Genetic Instabilities and Neurological Diseases. He assured us that he has the best and brightest working on this problem. Dr. Wells took us to a very nice dinner where I had the best enchilada ever.


Thanks Marek, Albino, and Dr. Wells, we had a great time. We are amazed at what you are doing. Good luck, we are rooting for you!


Yesterday: March 2, 2007

Yesterday at IBT in Houston we met Angela Cloud. Angela’s husband has a type of Ataxia called Spinal Cerebellar Ataxia 1 (SCA1). His family has been devastated by this disease. 2 of his siblings have it and 4 of his nieces and nephews have it. Angela is very interested in finding out all that she can about the disease and she loves to support others as she is one of the lead support group leaders in the area for NAF. Angela is also a cyclist so she met us in Conroe this morning for a ride before she had to be at work. She drove an hour and a half to be with us and rescheduled her appointments so she could ride a bit longer. She rode with us through hilly Conroe for about 12 miles before she had to go.


As we left Conroe, the hills disappeared and we started picking up speed, we hit 20 mph and held that speed, or near it for almost the entire day. Except for a couple flats and a narrow shoulder, we had a stellar day traveling 70 miles.

The Locals

We are getting into the flat bayou lands. We passed several marshes today and we have started to encounter some of the construction being done to rebuild from the hurricanes. It is hard to find a spot at an RV park because many of the spots are being occupied full time by construction workers.

Today: March 3, 2007

Started in the thriving metropolis of Batson, TX where we left off yesterday. We traveled 30 miles on rough road with no shoulder and stopped for lunch in Silsbee. Though we did not realize it at the time, we were all thinking the same thing: "We pushed a bit too hard yesterday, I am not sure if I can go any further today." However nobody said anything so we continued on. Outside of Silsbee, the shoulder smoothed out and was much roomier. After 40 miles our path took us to the north into the wind and a gradual incline. These two factors slowed us down to about 8-10 mph. Again we all thought "should we call for the sag" but nobody said a word. At 50 miles we were 10 miles away from our destination and at this point we could not throw in the towel, so we struggled through the last stretch and the burning muscles turned into verbal expletives which I will not repeat. During the last 5 miles or so David led the pack and I drafted behind him. This was the first time I had ridden behind a trike and he provided a great draft, I avoided the headwind and saved my legs, thanks David.

It was a struggle, but we made it. Today was officially the most exhausting day so far.

Tomorrow we will finally cross the Louisiana border! We have been in Texas for way too long and I am ready for a new state. We plan to have a nice camp fire and burn all of our Texas maps.

Additional Thoughts:

I am lucky enough to have great support from my entire family. My Uncle Steve is here with us for a while and he is actually one of my inspirations for this trip. He has an incredible amount of drive for fitness and pushing his body to the limits. A few years ago his knee stopped working. An X-ray told him that it was worn out and he needed a new one. This was going to be a setback for someone who loves to hike, fish, hunt, mountain bike and who downhill skis at least 50 days a year. However it was inevitable so he went ahead and had his knee replaced. Much pain and physical therapy later he found himself back on his mountain bike riding with a small group of friends in the middle of Nowhere, Montana. Somehow he managed to fall off his bike resulting in a compound fracture of his femur in the same leg that has the fake knee, ouch. So that sent him back to the hospital for a few more metal rods and lots of physical therapy. Years later, his knee will still only bend to about 80 degrees so he had to chop the crank on the left side of his bike so that he can get his crank all the way around (this is where I got the idea to shorten my crank). His drive to do crazy stuff and push himself to the limits remains into his late 50s. He still pushes the young guys on his back country ski trips and it is hard for me not to push myself to the limit when he is riding behind me humming and singing.

 

 

 

 

 

 

 

 

Busy, busy, busy

 

Tomorrow we are going to visit the Texas A&M medical center in Houston. We will meet a research team and hopefully have some press coverage. Should be fun. I'll tell you about it afterward.

Just a taste:


Another flat...

 

 

 

 

 

 

 

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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