Anita Macaulay founded the Jennifer Trust and led the organisation until her death on Thursday 11th of May, 2006. This is her profile page saved from the 'About Us: JTSMA People' section of the web site.
 Position: Chief Executive
Email: anita@jtsma.org.uk
Hi, I'm Anita Macaulay
My role at the Jennifer Trust is to lead the organisation on a day to day basis and to make sure that decisions and policies made by our Executive Committee are implemented and meet with legal requirements. My work is very varied! One minute I might be talking to a newly diagnosed parent on the phone, then rushing out to give a talk on our work to a group and then afterwards coming back to deal with staffing issues! On top of that I work with Gill, our Finance Officer, to check that our finances are in good order and that we are raising enough money to do all of the things we want to do to help our members! I've worked as Chief Executive since May 1992, before that I chaired the Executive Committee after founding the Trust.
In June 2002 I was appointed Chairman of the European SMA Taskforce - a group of SMA organisations from across Europe all working together to find answers to SMA by co-coordinating and funding appropriate research.
I founded the Jennifer Trust back in 1985 following the death of my baby daughter Jennifer, from Severe SMA (type I). At that point there was no information or support and research was just a dream! I was told at one time that no one was doing anything anywhere! For those of you new to SMA and the difficulties such a diagnosis brings I know that answers will never come quickly enough. But please, believe me when I say that we have moved a mountain in these last 17+ years. Now scientists all over the world are working to find a treatment or better still a cure and one day I know they will. With our help and that of other SMA groups across the world we WILL do it! In the meantime we at the Jennifer Trust will do our best to ensure that anyone who needs our services will get best care and support both at practical and emotional levels.
On a personal note I have a little boy Stuart who will be 11 years old soon. Stuart is adopted. Back in the dark old days of the mid 80s there were no blood tests taken from babies with SMA and even when pre natal diagnosis became available it wasn't possible for me to have such a test. so along came Stuart, aged just 9 months old! I count my blessings every day for being given such a beautiful precious child, although there are times when I get just as cross as any other mum! He is very proud of the fact that Jennifer was his sister and will tell her story to anyone who cares to listen. He also says he is privileged to have been adopted because he was chosen! He's a good fundraiser too!
I live in a large village near to Stratford upon Avon with a crazy poodle Jazzy, a cat who belongs to Stuart called Dippet and a rabbit,also Stuart's, called Speckles.
If you are new to SMA or have been involved for years you can always pick up the phone and talk to me - I founded the Jennifer Trust to give Help for Today and Hope for Tomorrow and I will never be too busy to talk to you!
love
Anita | 
