Lucky recipient
Georgia Hart
Deadline for contributions
12/31/2013
UPDATE FROM GEORGIA'S MUM
WE started this gift page for Georgia in September 2012.
All of the funds from this page will go towards life-saving treatment for a life threatening condition (Friedreich's Ataxia) through clinical trials. In the event of Georgia not meeting criteria for the trials, we will redirect all the funds to ATAXIA UK.
Georgia was diagnosed in March 2012 with Friedreich's Ataxia (FA).
This is a very rare and life threatening condition affecting 1 in 50,000 people. It is a progressive, inherited disease that attacks and damages the central nervous system resulting in gait and co-ordination disturbance. It can also lead to heart disease, scoliosis (curvature of the spine) and diabetes.
Symptoms typically present between the ages of 5 years and 15 years. Georgia was 15 years and two months old when we were given this devasting news. THERE IS NO CURE.
There has been some excellent work being carried out in recent years to advance treatments and clinical care for FA patients.
Pivotal to this process is the implementation of Clinical Trials.
The timescale for Trial to Patient is generally several years, maybe longer as much of the research is reliant on fund raising.
We are determined as a family that Georgia will be able to participate in up-coming trials, however there are no suitable trials currently in the UK nor is there any government investment so we are committed to Georgia taking part in Trials overseas.
We are members of F.A.R.A. (Friedreich's Ataxia Research Alliance) which is based in the USA and we are excited about a new trial to be launched in the Spring of 2013.
We estimate the costs involved in the first instance to be approximately £30k for extended stays and multiple visits to the USA and there are more Clinical Trials planned for the future in overseas locations. So we do need some help and would be profoundly grateful for any donation no matter how small.
If you would like to make a donation please select the Contribution button (below) or
If you would prefer to make a postal donation please email me (Bev Hart) at:
bev.hart321@gmail.com
Please copy and forward this Gift page link
to as many friends, colleagues and contacts as you can.
There are many people across the World who are affected by this dreadful condition and we are sure a cure willl be found soon but Clinical Trials are the only way this will happen.
Thank you,
Much love from Georgia and her family
Life Saving Gift For Georgia