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

The trustees have also appointed an independent scientific advisory board. To help assess applications received from the pharmaceuticals sector, this medical board are 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.


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