The Annabelle Rose Foundation for Spinal Muscular Atrophy. is a N/A group. Having alot of group type in Facebook: close, open and secret and it is a CLOSED group. The Annabelle Rose Foundation for Spinal Muscular Atrophy. has 0 members. So it is a Tiny group. You can find this group by searching 313500600939 on Google, Bing or Yahoo. 2015-03-28 02:14:03 is the closest date we have information about it.
The Annabelle Rose Foundation for Spinal Muscular Atrophy is a Charity Registered in the UK, founded in Febuary 2010 by Charlotte & Wayne Burfitt. The Annabelle Rose Foundation are Dedicated to providing help & support to families affected by Spinal Muscular Atrophy (SMA).
Our Objectives/Aims are to:
(i) Provide relief of persons suffering from SPINAL MUSCULAR ATROPHY and related
conditions.
(ii) Provide relief in cases of psychological and emotional distress of the parents and guardians and other relatives of such persons or of such persons who are deceased.
(iii) Support The Promotion of research into the causes and treatment of SPINAL MUSCULAR ATROPHY subject to the publication of the useful results of such research.
Charlotte & Wayne lost their first daughter Annabelle Rose when she was just 7 months and 12days old due to a genetic muscle wasting condition called Spinal Muscular Atrophy. Annabelle had Type 1 which is the most severe form of the condition and takes the lives of 80% of infants affected before they reach their first birthday.
Every child Charlotte & Wayne have in the future has a 1 in 4 chance of having the same disease; however, since Annabelle’s passing they have been lucky enough to have had a beautiful healthy baby girl – Blossom, who was one in October 2010. Since losing Annabelle, Charlotte & Wayne have made it their passion to raise awareness on this condition as well as raising funds to help families that need it most.
After hosting a Valentines Ball this year they had raised over £30,000 in less than 2 years for the biggest SMA charity in the UK, (The Jennifer Trust for Spinal Muscular Atrophy) it was this that gave them the push to start up a charity in memory of Annabelle. Since February this year they have been working tirelessly doing small events to raise money. Working initially to raise £5000 to become a registered charity.
On the 8th of December 2010 after just 10 months as a charitable organisation The Annabelle Rose Foundation for Spinal Muscular Atrophy was awarded Charity Status (Registered charity No. 1139272)
The Annabelle Rose Foundation aim to support sufferers of sma and their families however we can, in line with our objectives: e.g. funding for car/home adaptations, funding specialist medical equipment and toys, providing families with the opportunity of short holidays for those with a short prognosis (as we know first-hand the value of such things) and provide help support with funeral costs/arrangements, as well as providing emotional support for the families affected by the condition We will still support the Jennifer Trust by donating money to fund research.
Ultimately the above is to 'help those that need it most'......