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...
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.
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.
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 firstname.lastname@example.org. My MSN account is email@example.com 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!