Join Our Boys
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PLEASE take time to read the story of these heartbroken parents.
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On the 9th of November 2012, Padraic and Paul Naughton were told that their three little boys, Archie, who was 6 and his twin brothers George & Isaac, who were 2 ½ years old were all going to die very prematurely of a muscle wasting disease called Duchenne Muscular Dystrophy. Despite both being nurses, neither of them had heard of Duchenne; It is the biggest genetic killer of children on the planet. In January 2013, they went to Dublin to see the National expert in Ireland, who told them to ‘Go home and love your children’. It was at this point they realised they must act. They had scoured the planet and realised that yes, this is a catastrophic disease but there is hope and there is a vibrant community working tirelessly to try and develop treatments and even a cure for this vile disease.
With the help and support of the local community, The Join Our Boys Trust was launched on the 9th of March 2014, in the Abbey Hotel in Roscommon Town, Ireland. 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 would ‘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.
We also fund translational research projects 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 treatments, ideally a cure will be developed.
In order to meet our objects in a timely manner, we need to an additional raise €800,000 within the next year. This is ambitious but very possible, but we need help and support.
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.
Links:
www.joinourboys.org
http://www.independent.ie/life/health-wellbeing/health-features/video-mummy-am-i-going-to-die-parents-fight-for-their-terminally-ill-boys-futures-30685603.html
http://www.irishcentral.com/news/three-wonderful-little-irish-boys-face-a-dreadful-fate-can-anyone-help
Ask well as donating electronically here, transfers can be made directly to The Trust Account:
The Join Our Boys Trust
Bank of Ireland Roscommon
IBAN: IE78 BOFI 9054 2426 4816 23
BIC: BOFIIE2D
Sort Code: 90 54 24
Acct# 26481623
You can also help us spread the word by following us on:
Facebook
https://www.facebook.com/Joinourboys/
Twitter
https://twitter.com/joinourboys
If you would like to get involved with The Trust as a Volunteer or hold an event you can e mail us at [email redacted]
or
ring us on 00353 8512 12333.
We would love to hear from you.
www.joinourboys.org
Your support in sharing this would be very much appreciated.
terminal-disease-its-beyond-comprehension-35960823.html PLEASE Share!!
On the 9th of November 2012, Padraic and Paul Naughton were told that their three little boys, Archie, who was 6 and his twin brothers George & Isaac, who were 2 ½ years old were all going to die very prematurely of a muscle wasting disease called Duchenne Muscular Dystrophy. Despite both being nurses, neither of them had heard of Duchenne; It is the biggest genetic killer of children on the planet. In January 2013, they went to Dublin to see the National expert in Ireland, who told them to ‘Go home and love your children’. It was at this point they realised they must act. They had scoured the planet and realised that yes, this is a catastrophic disease but there is hope and there is a vibrant community working tirelessly to try and develop treatments and even a cure for this vile disease.With the help and support of the local community, The Join Our Boys Trust was launched on the 9th of March 2014, in the Abbey Hotel in Roscommon Town, Ireland. 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 would ‘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.
We also fund translational research projects 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 treatments, ideally a cure will be developed.
In order to meet our objects in a timely manner, we need to an additional raise €800,000 within the next year. This is ambitious but very possible, but we need help and support.
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.
Links:
www.joinourboys.org
http://www.independent.ie/life/health-wellbeing/health-features/video-mummy-am-i-going-to-die-parents-fight-for-their-terminally-ill-boys-futures-30685603.html
http://www.irishcentral.com/news/three-wonderful-little-irish-boys-face-a-dreadful-fate-can-anyone-help
Ask well as donating electronically here, transfers can be made directly to The Trust Account:
The Join Our Boys Trust
Bank of Ireland Roscommon
IBAN: IE78 BOFI 9054 2426 4816 23
BIC: BOFIIE2D
Sort Code: 90 54 24
Acct# 26481623
You can also help us spread the word by following us on:
https://www.facebook.com/Joinourboys/
https://twitter.com/joinourboys
If you would like to get involved with The Trust as a Volunteer or hold an event you can e mail us at [email redacted]
or
ring us on 00353 8512 12333.
We would love to hear from you.
www.joinourboys.org
Organiser
Jacqui Snype
Organiser
County Roscommon, Roscommon