About
About the Annabelle Rose Foundation
The Annabelle Rose Foundation for Spinal Muscular Atrophy is a charity
registered in the UK, founded in February 2010 by Charlotte & Wayne Burfitt.
The Annabelle Rose Foundation are dedicated to providing help & support to families affected by Spinal Muscular Atrophy (SMA).
Our Mission & Values
Our
Mission & Values
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.
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.
About the Annabelle Rose Foundation
Charlotte & Wayne lost their first daughter Annabelle Rose when she was just 7 months and 12 days 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 healthy baby girl – Blossom and a healthy baby boy - Stanley and more recently twins Primrose & Bluebell.
'after 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 in February 2010 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. They worked tirelessly doing small events to raise money, aiming initially to raise £5000 in order 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)
