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'DMD – Finding Solutions in Ireland'
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The Join Our Boys Trust was launched on the 9th of March 2014, in the Abbey Hotel in Roscommon Town. The event was feature on the RTE news that evening. In essence it is a Community Imitative; a community response to one family's crisis. To be told that one of your children has a fatal disease, that currently has no treatment or cure is devastating. To be told your three children have a fatal disease that currently has no treatment or cure is beyond comprehension; it is beyond words.
The Trust is managed by three Trustees and consists of four working groups, each of which has a lead. These groups are The PR/Communications Group; the Fundraising Group; the Clinical Research Group and the House Building Group. Every single person working in the Trust does so voluntarily. Many, many people give a huge amount of their time, energy and skill and personal resources freely. Everyone involved has made a massive contribution to the project and it is only because of their kindness, compassion and dedication to the cause that so much has been achieved in such a short amount of time.
We have two main projects that we fundraise for:
Archie, George & Isaac will have complex needs that will require additional resources to ensure that they can remain as independent as possible for as long as possible. The local community have fund raised extensively to fund the building of a specific house that will belong to The Trust. The family will 'borrow' the house for the time it is required for the boys. This large bungalow will need to accommodate three young boys using motorised wheel chairs, as well as other medical and therapy equipment. Everyone who has worked on this project to date has done so free of charge. ….The hope is that the building of the house commences this year. The challenge we have is that we require another €700,000 to ensure that it can be completed. Archie is now at the stage that he has to crawl up the stairs each night to go to bed.
We fund translational research project that have the potential to help everyone with Duchenne, regardless of the genetic mutation that they have. To date, the projects we have funded relate to the development of the micro dystrophin programmes. If successful, this potential treatment would slow down the disease considerably. Our hope is that in time, other treatment, ideally a cure will be developed.
We are also working to ensure that people with Duchenne in the Republic of Ireland have the same opportunities to access clinical trials, and new treatments as they become available as their peers in other parts of Europe. To achieve this we collaborate with all relevant stakeholders to ensure there is a partnership approach; we are determined to find solutions for this as quickly as possible.
Our ultimate aim is to ensure a treatment or cure is found for this catastrophic disease in time to save the lives of Archie, George, Isaac and all the children in this generation diagnosed with DMD:
We hope to achieve this by working hard to:
To raise awareness of Duchenne Muscular Dystrophy Nationally & Internationally.
To ensure 'Our Boys' have the additional resources they require to function; to remain mobile for as long as is possible and to live a life filled with purpose and meaning, despite their physical limitations .
To work in collaboration and support registered charities & other organisations developing translational research projects into Duchenne Muscular Dystrophy that aim to develop treatments, ideally a cure into this devastating disease for all children and young adults with Duchenne Muscular Dystrophy.
To Keep Moving; To Keep Marching & To Maintain Hope.
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