On Saturday 14th June I attended my first Limb Girdle Muscular Dystrophy information day in Daventry, Northamptonshire.
The morning started with Katie Bushby, a Professor of Genetics at Newcastle University. Katie spoke about clinical trials and when they come along how people could register to be involved in them. For me this was extremely interesting as I work in the Pharmaceutical industry myself and understood the language. Katie's analogy of DNA sequencing was absolutely spot on too! DNA sequencing is the process of determining the precise order of nucleotides within a DNA molecule. It includes any method or technology that is used to determine the order of the four bases adenine, guanine, cytosine, and thymine in a strand of DNA. The advent of rapid DNA sequencing methods has greatly accelerated biological and medical research and discovery.
Katie compared how the DNA sequencing process was similar to that of our home computers and information technology. A home computer used to be big, slow and expensive and now it's fast, as small as a smart phone and cost effective. This is how we are finding out about disease and treatments faster.
Next to speak was Dr Christopher Graham, Christopher spoke about many things, one being Psycho social trial and also acceptance. Personally I related to Christopher’s speech a lot. I understood that trials and research is not necessarily about a drug. As I mentioned this is the industry in which I work and I appreciate that sometimes a trial can be about psychology, physiology or maybe a piece of apparatus, a walking stick, a hearing aid etc.
Rosanne from the Muscular Dystrophy Campaign then spoke about bridging the gap and lots of other fantastic things that are on-going with the charity. Rosanne then went on to introduce myself and fellow Advocacy Ambassador, Gemma Rose, to everyone. It was now our turn to speak!
As unprofessional as you would expect of me, the first thing I did was look down the lens of the projector that was glaring onto the stage. Brilliant. Gemma spoke first about what we, as ambassadors are here for and why we do what we do. I added to this afterwards and tried to make it clear that we are here to help.
The advocacy Ambassadors are all across England and in some way, will be linked to or affected by Muscular Dystrophy. There are quite a few of us and many have specialist subjects or experiences in advocacy. A really nice group of people too!
|Here To help|
The morning was rounded off nicely by a man called Stephen Hiles who spoke very enthusiastically about the fund raising he, family and friends have been doing and it all sounded so good too. Well done Stephen!
We all then went for lunch, this was a perfect opportunity for me to do some networking and to meet people I’d only ever tweeted before today or had only known through other social media. I thoroughly enjoyed it. I met Hayley Lloyd, whose son has Limb Girdle Muscular Dystrophy. Hayley is also raising funds for the Muscular Dystrophy Campaign by skydiving… with a celebrity!
The afternoon was a time for some workshops; again I was vocal speaking about the personal independent payment scheme and also relationships, sexuality and disability.
We finished what was a fantastic day with even more networking resulting in some great connections and friendships being made with people that can truly relate to one another.
I honestly feel that I left Daventry with more knowledge about my condition than ever before. Once again, I cannot thank the Muscular Dystrophy Campaign enough.
Thank you all.
You can follow me @HywoodMartin and the Muscular Dystrophy Campaign @TargetMD on twitter.