Health and wellbeing

Funding level: £1,001 to £5,000

Description

We are organising a meeting of parents,carers and sufferers of this condition and bringing experts from America as well as lots of UK doctors and experts together at Birmingham Children's Hospital in November.
As well as lectures and presentations from the world leaders in their field there will be an opportunity for patients to meet doctors on a one to one basis for advice.

My daughter has had this syndrome since she was born. It is a part of a condition called McCune Albright Syndrome that affects her in many different ways. The most noticeable is that the Fibrous Dysplasia affects all her bones and has made them susceptible to fractures and deformation over her 16 years. She has been in a wheelchair for many years but this does not affect her cheeky happy attitude to life and she is a joy to anyone who knows her.

We were helped in the early days by parents and doctors in the USA as they knew more about it just because of there sheer size and the fact they therefore have more people with the condition. So when an opportunity came up in 2007 to form a similar support group in the UK to help future sufferers and educate our doctors (as it is so rare 1;100,000) I jumped at the chance.

We are funded purely by donations and fund raising. We have no employees and nobody receives payment for anything. We are staffed by volunteers. Myself and 3 family/friends cycled coast to coast last year to help raise funds to pay for these doctors flights and accommodation. They even contribute some of there own expenses as they are so committed to this cause and the families. We hope the funding will help us to make this an annual or biannual event.

The money would be used pay for the costs but also to ensure we don't have to charge anyone who wants to come anything to attend as we are about getting the information out there to help people make the right medical choices with this complicated condition.

This is the second such event we have organised and this one covers 2 days so is far more expensive. The last one we organised attracted over a 100 affected people and lead to all the European doctors who are experts in this condition coming over and meeting the American doctors and together they have formulated a recommended best practice strategy for McCune Albright Syndrome and Fibrous Dysplasia treatment that we can give to any new sufferers or doctors who want it. It has also lead to them coordinating on research projects so that there is less duplication and therefore greater focus on improved treatments.

Thank you for taking the time to read about our project and please feel free to visit our website to learn more.

Fibrous Dysplasia Support Society

Location: Birmingham

We started in 2007 as a group of parents and sufferers who got together as there was so little known about the condition by doctors.
I'm proud because my daughter has this condition for which there is no cure (thats her in the pic with one of the doctors we are bringing over!) and she is amazing!
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