Early this year I received an e-mail from Joyce Nelson, President and CEO of the NMSS. The e-mail was sent to all on the NMSS mailing list (I can't remember how I got on it). The e-mail set out what had happened in Ms Nelson's first year in post and asked for feedback. I sent a response which picked up all my usual moans - that research did not appear to have advanced much, that the NMSS was too close to the main MS drugs manufacturers etc etc.
I didn't expect any response (I'm a British citizen). At best I expected a thank you from a junior official. Today I received a very detailed response from Ms Nelson, which covered all the points that I had raised and thanked me for my contribution etc. She said that she had passed my e-mail on to Dr Richert, Vice Presidnet of Research and Cinical Programs. Dr Richert provided a detailed response to all my points and his response was very hopeful for the future. He emphaised that technological advances would lead to better understanding / treatment for this disease etc.
As a serial complainer I was incredibly impressed by the responses received from Ms Nelson and Dr Richert. They are a real credit to the NMSS and I honestly feel that they are very determined to rid the world of this curse.
I do not feel it appropriate to reproduce both e-mails, but the final section of Dr Richert's e-mail struck a chord. His response was honest about the challenges, but also hopeful.
"But, the recent advances in molecular biology, cell culture techniques, and in deciphering the human genome provide unprecedented opportunities to tackle MS, TODAY. With our current technologies, new therapies abound in various stages of development. I am convinced that technology will enable us to stop this disease well before we know how to prevent it. Those involve different “cures”. But it is our responsibility to vigorously tackle each of the three cures: stopping disease activity/progression, repairing the nervous system, and preventing the disease altogether. These will require different strategies and different technologies. We are aggressively pursuing all three and I am certain that you will be impressed as you witness the developments of the upcoming years".
As I inject Rebif injection number four tonight (so far no problems), I am hopeful that in the not too distant future things will turn out for the better.