Is the charity registered with the Charities
Commission?
Yes. Joining Jack was registered with the Charities Commission
on the 17th July 2012. The Registered Charity Number 1148156
JOINING JACK
Why has the Charity been established?
Andrew and Alex Johnson's son Jack, was diagnosed with Duchenne
Muscular Dystrophy (DMD) in November 2012. Since Jack's diagnosis,
we are not ashamed to say that we have cried every day and have
spent endless hours scouring the internet to find answers.
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,
human clinical trials have begun to take place with encouraging
results. It's for this reason that we have set up our own charity
Joining Jack, to help move things forward for Jack and other
children like him.
What is Duchenne Muscular Dystrophy (DMD)?
Please take a look at the about DMD section of the website. /menu/about-dmd.aspx
Does the charity have a mission statement?
The charity JoiningJack has the ultimate aim of finding a cure
for Duchenne Muscular Dystrophy. If a cure can be found
or treatment discovered to increase life expectancy it will not
only help Jack but boys throughout the world suffering from
Duchenne Muscular Dystrophy.
What are the charities objectives?
The objects of the charity are:
To relieve the needs of sufferers of Duchenne Muscular Dystrophy
(DMD) by funding research into methods of treatment and cure of the
condition.
Is the charity linked to any other
charities?
We are a member of the Duchenne Alliance (which is an
alliance of independent Duchenne organizations dedicated to
advancing our missions to improve quality of life, care, and
treatment of those affected by Duchenne). Over the coming months
and years the charity aims to choose carefully charities that they
wish to align themselves with to help achieve the objectives set
out in the Deed Of Trust submitted to the Charities Commission.
How is the money raised going to be
allocated?
The charity has appointed a board of Trustees. The trustees are
responsible in providing a strategic overview of direction for the
charity and ensure appropriate safeguards are in place for
legitimate distribution of amassed funds. The trustees of the
charity are
Chair- Andrew Johnson
Vice Chair- Matthew Johnson
Treasurer- Lynn Hassan
General Trustee- Daniel Barker
Over the coming months the trustees are to appoint an
independant Medical Board. To help assess applications received
from the pharmaceuticals sector the medical board appointed will be
asked to review these applications and report their findings back
to the Board Of Trustees. The final decision on whether the charity
will accept an application and therefore release the required funds
will be taken by the Board Of Trustees once they have considered
the findings from the Medical Board.
Joining Jack is also a member of the Duchenne Alliance which
allocates funds to research projects. Joining Jack are particularly
keen to focus on transitional research. Research that takes
potential therapeutics approaches out of the laboratories and into
clinical trials.
Does the Charity employ anyone?
To help deliver the strategic goals of the charity the trustees
have created a working group that consists of approximately 16
people. This working group has the responsibility to help organise
and deliver the charities flagship events. All trustees and
individuals on the working group committee are volunteers and are
not paid so given the time free to the charity. This means that
every penny of every pound raised goes to help fund research to
help find a cure for Duchenne Muscular Dytrophy.
Does the Charity have a financial target in
mind?
No. To change the progressive nature of DMD it is believed that
a range of drugs will have to be developed to treat the various
problems that arise from having the condition. We want to help put
funds into as many of these projects as possible.
How do I get involved with the Charity?
For ideas on fundraising for the charity take a look at the
section Fundraise for Joining Jack.
/menu/fundraise-for-joining-jack.aspx
To become a Corporate Partner or all other enquires please
email
info@joiningjack.org
Does the Charity have a business plan?
Yes, please email info@joiningjack.org for a
copy.