Sunday, 21 June 2015

Chiari Blogs: The Ann Conroy Trust. Who are they?

Hello everyone!

If you read my first post this month, you will already know that I have decided to write about my “experience” living with a brain condition. (If you haven’t seen that post, you can read it here). Today I want to take some time to tell you about the charity that I am supporting on my JustGiving page. 

Who are they?
The Ann Conroy Trust is the only charity in the UK that offers support, training and education to medical professionals to broaden their knowledge and understanding of Arnold Chiari Malformation and Syringomyelia. (Visit their website for more info on this).
Further to their research and professional training, they offer support to people with the conditions and their families too.

How did I find them?
I had been diagnosed for over a year before I had heard about The Ann Conroy Trust. I was visiting a relative in a hospital regularly and his nurse happened to mention the trust to me as if I should have known about them. It took me a little bit of time to give the helpline a call because I didn’t exactly know what to say. I knew very little about the condition, I knew how I was affected but that was it. I had worries, I had questions and quite frankly I was scared of the unknown. A really soft, friendly voice answered the call and within minutes I knew that I was talking to a wonderful lady and that some of my questions could be answered. More than anything, she was an understanding ear, someone that has heard pretty much everything I had said over and over before but still had the patience to let me flood it all out. She offered advice of how I can help myself and where to go medically. (They have affiliated surgeons with the trust). Since that first call with Lynn, I have joined the group on Facebook. From this group I have met up with someone local to where I live who has become a friend and an inspiration. She really does help me “cope” and I would have always felt lost had I not found the Ann Conroy Trust!

They deserve every single bit of support. The conditions are rare and easily over looked or not even recognised. (In my case I was apparently suffering with “typical migraine” until I had MRI scans)!
Awareness is needed!

How can you help them?
If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).
Disclaimer: I have not been asked to write this post. All views are my own and that is why I would like to spread awareness and hopefully raise some money for this wonderful charity.

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