NMSS - hope

bromley · Family Elder Joined: Sep 11, 2004 Posts: 1847

Dear all,

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.

Ian

Arron · Posted: Fri Feb 17, 2006 1:42 pm Post subject:

great post, Ian. Thank you for taking the time to share and it is wonderful that the NMSS took time out to respond to your concerns.
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gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

bromley,

Thanks for the post. It is very hopeful. My personal feeling is that MS is not cured or truly treatable yet because the technological devices to sort out this disease are not available.

It sounds like the doctor is saying the same thing. The better the molecular biology, the greater the chance of finding out how to help us.

Many people from all over the world are working to cure this disease, so it remains elusive due to techhnology, not for the researchers lack of trying.

gwa

kareng7 · Family Member Joined: Mar 21, 2005 Posts: 79

Thanks, Ian. That was very encouraging. It helps to know how truly committed they are to have responded to you in such detail.

It's also important to note that research is not just ongoing into MS, but into all the immune-related diseases and, as we've probably all heard, advances in one area lead to advances in other areas, too. Frequently, medical studies show that drugs intended to help one disease have a positive impact on others.

I believe they will sort MS out, and they will find that it's not just one disease, but several related diseases, much like cancer. And as they get close to one, the others will fall into place as well.

I've mentioned before that my husband also has an autoimmune disease (psoriatic arthritis) and uses an injectable drug. Recently, he asked his rheumologist how long he's going to have to keep sticking a needle in his leg. "Oh, the writing's on the wall for injectables. We're really close," replied his doc. I think of that quote often.

I think the writing's on the wall for MS, too.

Jaded · Family Elder Joined: Jul 27, 2005 Posts: 159

Ian

Well done on being a serial complainer and thanks for sharing the response.

I firmly beleive you get nothing unless you complain or ask for it!

We can only hope that they are closer than we all think.

J.

Arron · Posted: Sat Feb 18, 2006 12:45 pm Post subject: