Aspen - Vail 101 for Joining Jack

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Aspen - Vail 101 for Joining Jack Storm Silich rode 101 miles from Aspen to Vail in September of 2015 to raise funds for Joining Jack and finding a cure for Duchenne Muscular Dystrophy.

About Jack Johnson
Our son Jack is everything a seven-year-old should be. He
is cheeky,excitable and a big softy at heart.He loves to make
dens, play hide and seek and wave his lightsaber like a Jedi
Knight. Jack started school two years ago,beginning his journey into the
big wide world.But what our beautiful son does not yet know
is that he has a terminal,incurable condition.In October 2011 we
re

ceived the shattering news that Jack has Duchenne Muscular
Dystrophy (DMD). Failing a medical breakthrough, Jack's life will follow a
predetermined path, mapped out by this progressive muscle
wasting condition. In short, he will no longer be able to walk by
the time he reaches adolescence and will lose the use of every
single muscle in his body thereafter. He may need spinal rods to
keep him upright and ventilation to help him breath. Eventually
his heart and lungs will fail and he will die. Since his diagnosis, we are not ashamed to say that we have
cried every. There are no words to describe the utter
devastation felt upon hearing that your child's life will be cut
short because there is no cure. the amazing boy he is today but now,
unbelievably, we must prepare ourselves for his steady decline. And the worst part? Seeing him struggle as his
body wastes away and being absolutely powerless to help. Currently there is very little awareness of DMD, and research into finding possible treatments is drastically
underfunded. However, over the past few years, with help from charities around the world, clinical trials have
begun to take place with encouraging results. It for this reason that we have set up our own charity, to help move things forward for Jack and other children
like him. We have always wanted a quiet family life and have never felt comfortable asking for anything, but
now is not the time to be proud. We cannot sit back and watch Jack ravaged by this condition if there is any
chance, however small, that we can make his future a more positive one. From the bottom of our hearts we are asking if you can join us in the fight to eradicate DMD. You can contribute
by making a donation, organising an event or simply following us on Facebook or Twitter and spreading the
word about our cause. Time is precious to us now and for ANY support you can give we will be eternally grateful. They say that
children with DMD accept it better than their parents but the day we tell Jack about his illness will be the
toughest day of our lives. To know that we are facing a future without our beautiful son is impossible to believe. At least with your help we will be able to tell him that we gave everything we had to this fight of all fights. We have had the greatest pleasure watching Jack develop into
Take a look at www.joiningjack.org for
more information on how you can get
involved. You can get in touch by following us on
Twitter (), finding us on
Facebook (facebook.com/joiningjack) or
emailing us, at [email protected]

- Alex and Andy Johnson

15/02/2021
15/02/2021

Important findings about the readiness of the UK to host clinical trials in gene therapy have been published in the Journal for Neuromuscular Disorders.

08/12/2016
01/07/2016

Jack is raising money to help JOINING JACK

05/03/2016
05/10/2015

Jack Johnson, from Wigan, Greater Manchester, joined the England Rugby World Cup stars last night. He suffers from Duchenne Muscular Dystrophy and will eventually be paralysed.

Jack and James at Twickenham
05/10/2015

Jack and James at Twickenham

15/09/2015

-VAIL101FORJJ The mighty Colorado River provided a great back drop for Saturday's ride through spectacular Glenwood Canyon.

A few pics of yesterday's ride. Thank you all again for supporting Storm, Joining Jack, Jack Johnson and raising awa...
13/09/2015

A few pics of yesterday's ride. Thank you all again for supporting Storm, Joining Jack, Jack Johnson and raising awareness and money to find a cure for Duchenne Muscular Dystrophy. Arohanui (Big love) to each and every one of you.

Big Ride tomorrow! 101 miles in the majestic Rockies. Weather Forecast looks super and the bikes are tuned. What an ...
12/09/2015

Big Ride tomorrow! 101 miles in the majestic Rockies. Weather Forecast looks super and the bikes are tuned.
What an amazing show of support for Storm's fundraising efforts on behalf of Joining Jack and a cure for Duchennes Muscular Dystrophy (DMD) . We set a goal of $5K and have almost doubled that. Thank you to everyone who has supported this inaugural ride. You are all so very, very generous. A thousand thank yous.
To the Johnson Family: Jack, James, Alex and Andy; we hope to make you proud.
Will post pics after we have completed the ride.

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