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The Front Line

How can you really appreciate a battle without going to the front line? There often is a disconnect that occurs. This can often happen in corporations. As a field rep, we would often get our direction from corporate and oftentimes felt that they didn’t really understand our needs or issues. The good leaders would travel with reps to gain true knowledge of the issues.
How about a patient living and feeding off of hope? When you have no cure, that is all you hold onto sometimes. I can honestly say as time goes on and more and more studies fail, sometimes that hope lessens. Thankfully, for me, I got a much-needed shot of adrenalin. I felt like General MacArthur visiting the troops on the front line. When he visited them, he saw in his own eyes what was going on. And in return, they were reinvigorated to keep battling and to win the war. I was able to visit Cedar Sinai in Los Angeles last week and tour the ALS research facility. Like MacArthur, I saw with my own eyes and heard with my own ears the strides the researchers are making in this battle against ALS.
 It is too complex to discuss here but I saw the answers through a microscope that can and will delay or stop progression of ALS. Granted, it has only worked on rats but a human study has been funded and will start in about a year. If all goes well, this may be available in as soon as three years to patients. I am an optimist by nature, but I really don’t think I’m putting the cart before the horse. I believe in the scientists and researchers working in the lab. I felt what they did wasn’t just a job but a mission to provide a solution for patients like myself. Heck, they even said they read my blog and felt inspired by it. If what they are doing is being done elsewhere throughout the world, then solutions will be forthcoming. Unfortunately, not all patients have the luxury of time but I believe there is light at the end of the tunnel.
When I was saying my goodbyes, the researchers were kind enough to say how honored they were to meet me, and how it motivated them to keep up the fight. I explained how much the visit meant to me mentally and thanked them for what they were doing. After my diagnosis, I promised myself that I would never give up hope or stop fighting, and this was just the jolt I needed. I wish every ALS patient could visit the font line like I did. Then they would also see that there are brilliant difference makers out there working diligently to end the devastation of ALS in our world.

5 responses to “The Front Line

  1. ⋅

    Way to go Jim … a true leader must have optimism as well as realism! Another great message for all of us!

  2. John Johnson ⋅

    Jim, this was a great trip all around. The message we got from Clive and his team at Cedars is so exciting, clinical trials, dates and details. The tour was very enlightening. And then to San Diego for the Lawrence A Rand prize. Your acceptance speech and the response from those in attendance was fantastic! You are a “big deal” and continue to “stay classy” bro. Love ya -John

  3. You are inspiring. I am deeply touched by your optimism for the future. What a blessing you are.

  4. Clive Svendsen ⋅

    Hey Jim it’s Clive… It was great to see you and hope all is well. We think of you often as we work towards a new therapy with stem cells. Hang in there buddy!!!

  5. Gretchen Miller ⋅

    Dear Jim,
    Thinking of you often as we work harder than ever at Cedars-Sinai to figure out this ALS thing! I hope you and your family are doing well. Please send my hello’s to everyone.

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