¿es afectado usted por el síndrome x frágil y vivo en América Latina?

en primer lugar, por favor perdóneme cuando mi español de América Latina no está bien en este momento, entonces uso a un traductor de Internet.

por este gran viaje de motocicleta, quiero encontrar a la gente de países diferentes a lo largo del camino, que está implicada con el síndrome x frágil, si ello ser con una organización o tener a un miembro de familia con x frágil. Creo que en la reunión podemos crear algo global, algo que sólo puede ser un movimiento en una dirección positiva. en la llegada juntos podemos ganar el interés de los habitantes del barrio y los medios locales, extendiendo la conciencia a tantas personas como podemos.

tan si usted leer este y vive en América Latina por favor para enviarme por correo electrónico vía el chasquido de contacto en el lado derecho del derecho encima, debajo del viejo mapa y vamos a cosas arange desde allí. me he puesto en contacto con la gente en Norteamérica hasta ahora, entonces este viene todo juntos muy bien.

gracias para su tiempo y muchísimo tan la superficie inclinada espero a visitar sus países hermosos.

buena suerte todos

big thank you`s !

I want to say on behalf of the Fragile X society & myself huge thanks to the following : Dirt Bike Rider monthly magazine, for covering the fragile x pedition on their website. DBR is a superb magazine covering all aspects of off-road riding. Get all the latest information on motocross, supercross & all things off-road. Covering key events, in depth interviews & expert opinions as well as the latest tests on new machines. A passionate bunch !

Thank you Motorcycle News. The quintessential motorcycling paper. For their section on the Fragile X Pedition. MCN the voice of motorcycling

And a big thank you to Geoff Hill, author of "The road to Gobblers Knob". A fast paced, compassionate, hilarious and inspirational tail of 2 men out there amongst it on motorcycles, riding the length of the Pan American highway, from the bottom to the top. Read this book and you will be out there amongst it also, without leaving your seat. Brilliant !. Geoff has kindly mentioned the FXPedition in his News paper. "The Newsletter"....

An immense thank you also, to Salvador, my Spanish teacher. Salvador has given me his free time and patience, with a number of one to one lessons as a donation to the FXPedition. These one to one`s do not come cheap. I strongly recommend Salvador as a teacher in Espanol. He is articulate, friendly, understanding and has the ability to bring out confidence and get the information untangled in heads, especially mine, which is a tall order ! I am now actually beyond just saying " Una ceveza por favor ". I recommend him without doubt, if you are considering learning Spanish in London. If so please contact me and i will forward his details. Thank you mate !

Thank you TRANSWORLD COURIERS for the very generous unconditional donation to the Fragile X Society. I have been working with Transworld for around 10 years now, sending all sorts all over the planet, from Jars of missed marmite to Australia, Extremely urgent cd-roms to the states, forgotten underwear to the far east and next day documents to every destination imaginable all for competitive prices and always on time. They deal with our impossible requests as easy as i ask them to. But what always gets me in their direction is the one to one personal, friendly way they do their stuff, not a 10 minute soul destroying automated nightmare chain on the phone. I have made some great friends with them , without ever meeting any of them. SO once again, Thanks Val, sonia, Daniel, steve, nick, and all at TWC !.........Please click and clock the TRANSWORLD COURIERS LINK ON THE RIGHT, whenever you want move ya stuff around the planet

The Route - An early direction

I have always imagined that in these "civilised" times, anyone and everyone can access anywhere on earth that desire drives them to get to, via some sort of designed road. After hours of eye ache and the endless spinning of world globes scattered around the office, it struck me that i must be able to get from the top of the world to the bottom on a motorcycle without having to jump land for a ship. The Pan American highway. The Beaufort Sea, off Alaska - all the way down to the Drake passage, South of Chile / Argentina on land. It seems undecided to where the road actually starts and finishes. Some say it starts in Circle, a town just south of the arctic circle in Alaska and ends in Puerto Montt, south of Santiago, but not as far as Tierra Del Fuego. Some say it starts as you hit Latin America, heading south. It doesn`t really matter . All that matters is that i will find out and let you know, unofficially.

The Pan American looks like a single track down from prudhoe Bay, through Alaska and into Canada. At a place near where the yukon territory hits British Columbia the road crows feet off in all directions. Either take the south west direction towards and then down the western coast of Canada and the states or head inland and ride the fins of the Rockies. Both end up at the border with Mexico. Through Mexico, riding down the centre, zig zagging to either coasts at some point on the journey. Across the first; as they recon, testing border crossing, into Guatemala. Hit El Salvador, then slip into Honduras for a quick blast before entering Nicaragua, which then leads into Costa Rica and then the final Central American country of Panama. Bearing in mind the mudslides, hurricanes, pot holes, dead donkeys, the odd bandit massive and maps have all been kind to me (or i have payed attention when necessary). Crossing into Colombia from Panama is a worthy topic for adventurous discussions. The region is known as the Darien Gap. A 100-ish km,thick ,lush rain forest region, which is virtually impassable. Only the very , very hardy attempt this section. There are no built roads through here. Experts say that roads and busy transit will destroy this rich , biodiverse region. Also it looks like they are a bit scared of trying due to the criminal activity there. There seems to be two answers to this green wall and that is to fly over it to Bogota or jump on a boat (just a tad of a jump land for a ship) to Cartegena. We shall see what happens and what the options at the time evolve into. I will chase the option of a boat though , to sail us to the famous, colourful, Spanish main, city of Cartegena. After all that down, down through Colombia, listening carefully to the local friendlies as they advise where not to go, where maybe to go and where to definitely not go. Into Ecuador, Quito, up and over mount Cotopaxi, to the peruvian border. Up again into the sky along the Andes into Bolivia and her Salt Flats, stay in the sky for a few more wonderful rides. Down into Argentina. Slog over the Pampas, to wrestle with the eternal patagonian winds. Probably zig zagging again into Southern Chile and the commune of torres del paine, where some say god, ended up chucking all the beautiful stuff he had left over after the 7th day of creating everything... Then thats it, Tierra Del Fuego. the end of the road. Well i am going to have a look to see if i can ride any further anyway.

Its impossible to stick to a defiante route on an epic like this. We will end up heading down all sorts of different routes. Listening to locals with knowledge of wonderful must goto places way off the beaten track and then some more. Spontaneous situations will send us all over. Maps sometimes fib. Countries so fat you just have to follow the handle bars. I intend to have tasks on the journey also. Finding Fragile X organisations. Searching out Aon Group limited offices to say hello to. Mastering the tango on an Argentinian pavement. To sleep in a steam train cemetry. many things that haven`t even come to mind yet. All these things will take us on unintentional routes. To have an adventure spreading the word of the Fragile x cause.

raising a child with a disability - whats it like ?

This is a piece of writing by a lady named, Emily Perl Kingsley. Emily gave birth to a boy with down syndrome in 1974. With her husband Charles, they became activists, educating the public and developing resources to help children with special needs fulfill their full potential. Emily wrote "Welcome to Holland" in 1987.

WELCOME TO HOLLAND.

by Emily Perl Kingsley.

When you`re going to have a baby, it`s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "welcome to Holland".

"Holland ?!?" you say. "what do you mean Holland ?? I signed up for Italy ! I`m supposed to be in Italy. All my life i have dreamed of going to Italy !"

But there`s been a change in the flight plan. They`ve landed in Holland and there you must stay.

The important thing is that they haven`t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people who you would never have met.

It`s just a different place. It`s slower paced than Italy. Less flashy than Italy.But after you have been there for a while and you catch your breath, you look around...... and you begin to notice that Holland has windmills...... and Holland has Tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy..... and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say "yes, thats were i was supposed to go. That`s what i had planned"

And the pain of that will never, ever, ever,ever go away...... because the loss of that dream is a very very significant loss.

But...... if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

thank you - BIKE ANIMAL !!

I want to say the biggest of thank you`s to all at the BIKE ANIMAL website on behalf of myself and the Fragile X syndrome charity. Jenna and the gang have written a superb article on the Fragile X Pedition, capturing its essence.

BIKE ANIMAL is a passionate breath of fresh air to all the biking family. all aspects of motorcycling are captured on the site, including all the latest news in the racing world. They are this seasons title sponsor of Honda`s racing satillite team , with the talented Leon Camier in the seat fighting for the British Superbike title. Top luck leon !!..... On the site you grab road safety advice, submit your bike and tour reviews, vote for bike friendly accomodation, enter loads of compititions, list your bike and accessories for sale free of charge, get essential information relating to insurance, legal support and rider training, plus more , more & more !. the forgotton 2 wheel sport of speedway is covered on Bike Animal also. They are an ambitious lot who are striving for an interactive place catering for us out there riders , who are actually on our side !

Thank you BIKE ANIMAL !!

click and clock the Bike Animal link on the right.

THE WHOLE POINT - A DESCRIPTION

Heres a photo of sian & her uncle me. Sian is 14 years old. She is a beautiful, affectionate, inquisitive, spontaneous, sunshine summer days bringing member of my family, with the natural ability to have me mesmerized for hours, sometimes leaving me with the feeling that my ribs are slowly squeezing my heart dry, not to mention an incredible high speed knack for completing jigsaw puzzles. My sister susans child. She has the full affects of fragile X Syndrome.
Sian was developing as any other baby would be until she was 20 months old, when Susan started to notice her attention span was leaving and her developed skills were disappearing. The Doctors who studied Sian, at first thought she was showing signs of autism, but then at the age of 3 and a half she was diagnosed with Fragile X Syndrome. We all thought out loudly " Fragile whattttt !?" , as does everyone i meet.

Fragile X Syndrome is an inherited cause of mental disability. Us Humans have chromosomes, 2 of which are sex chromosomes. in males these chromosomes are X and Y, in females X and X. Chromosomes are bundles of genes that are passed down through family generations. The Fragile X gene is called FMR1. Fragile X attacks the X choromsome, which over generations mutates, so the cycle of DNA in genes , grows, making the mutation unstable leading to full fragile X syndrome. Because females have X and X chromosomes and males X and Y, it has been said that if females have one "fragile" X she also has a "good" one, which can compensate for the fragile one, so probably will not suffer the full effects of fragile X . This is not the case with our Sian, she has FULL fragile X syndrome, she is seriously mentaly disabled.

For a full understanding and furthur information please click and clock the links i have displayed on the right.

i am not alone

Superb news ! i shall not ride alone, i have an intrepid, fearless, life and laughter lover joining me for the trip. Pete Peil the corageous coloradian. I met pete this year, 07, during the peru / chile excursion. Here in the photo he can be seen absorbing information from the gargantuan blue skies above the sinuous peruvian pan americana, or just grabbing a kip inbetween wrestling 100km rides, only he knows. I am chuffed that he`s joining me. There is a large part of me that wants to do the trip on my own, but with friend i think more doors and highways will open and there isnt better than petes company. Hes an experienced rider especialy at high altitudes and on dirt. A nurse by trade, who happened to be there for my moments of "arghhhhhhhhhhhhh" in peru / chile. A very amicable chap who is well up for a challenge, new experience and laughs along the way. Good on ya pete !