Coping with ALS Video

General Thomas Mikolajcik expresses his disappointment with the progress of finding a cure for ALS.
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My name is Tom Mikolajcik. I am either an MD or a PhD. I am a PALS, a patient with ALS. I was diagnosed in October 2003. I was given a death sentence and told to get a second opinion, while given a prescription for Rilutek which has limited value. Only by the grace of God am I here to speak with you today and I have vowed to keep speaking until I no longer can. I’d like to congratulate the Department of Defense and Dr. —Patrick in particular for putting together this long overdue workshop. I applaud your workshop on its goal to reach consensus for future research priorities. My hope is that these recommendations will provide for the beginning of a strategic plan, one that addresses the need to work on this disease from all angles. Concurrently causes, exposures, diagnostics, treatment and prevention to prioritize any one of these areas and hold back on another could delay a discovery that could be vital to the ultimate goal of ending the disease. In other words, my hope would be that you just not think outside the box, but totally — it, enlarge it to fit the enormity of this horrific disease. Some say that a lot of ALS research has taken place. My response is we need results not reasons. It’s been 70 years since Lou Gehrig made his farewell speech. And we have basically nothing, one question about drug in 70 years, how many thousands of private farewell speeches must take place before realize we’re not doing everything we can. Will I have to give mine before an appropriate large scale comprehensive plan to tackle ALS has carried out? As you all know Military Veterans like myself, face a higher risk of this relentless killer. For this reason, the government is compelled to assume leadership of this issue. If these soldiers were dying in the field, rather than quietly at home has a consequence of their service, we would leave no stone unturned. We would go to the best of existing resources and programs to make sure they had whatever they needed to succeed. We would also build together whatever was necessary to save them and insure no man or woman was left behind. So yes, there maybe many ongoing efforts into ALS, but potential success is flooded by little cooperation, coordination, and sharing of information. We have under funded researches across the country, each working in their own little box. This approach has been unsuccessful this far. We need to open the doors of labs and encourage collaboration. There should be no more deaths due to protection of ALS related, intellectual property or potential profit. Some of us are in the hurry folks. I challenge you to develop a strategic plan that allows for this disease to be examined wholly and comprehensively. I understand that today you have gathered with particular focus toward causative agents. The opportunity to understand military risk factors is of course important. However, it is by no means enough. As we know, some potential risk factors may not be susceptible to mitigation. Therefore, it is the government’s absolute responsibility to direct research into a full understanding of ALS. So that if risk factors are or are not identified and showed other, we are significantly on our way to what therapy for this disease. We must prepare to offer our soldiers, sailors and marines, an opportunity to fight this disease. We cannot fight this battle defensively, hoping to limit exposure to environmental risk. We must also fight it offensively as well with appropriate medical arsenal. For Department of Defense has already begun efforts into understanding this disease. The most sensible investment is one the leverages the current ongoing research into a robust and comprehensive program. Let’s do what it takes to finish this enemy off once and for all. Make the commitment. We have the intelligence, the resources and the competencies. It’s time to apply the leadership that DOD can and should bring to this campaign. As you know three and half short years ago, the veterans administration o

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