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Jim's MS Clinical Trial Fund

Organized by: Emily Pickart

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THE STORY:

We started this fundraister to help Jim Zielieke afford to undergo a clinical trial that has a chance to be an actual cure for Multiple Sclerosis. In order to get the procedure, Jim will need to undergo chemotherapy and have a stem cell transplant.

Although insurance can reimburse some of these expenses, it will definitely not come close to covering all of them. Over the next 2 months as part of the treatment, he needs to stay in the hospital for a few weeks and at a hotel in downtown Chicago for a few weeks to be monitored. Jim, who just turned 40 this year, closed down his Fond du Lac, WI bar - Schnickelfritz - this summer in part to prepare for this procedure this Fall. He has been working hard but struggling for the last few years to maintain a business while coping with his mobility issues, fatigue, and other symptoms. He will be unable to work (or even find a new job) until probably sometime in December if all goes well. It would be a struggle to cover these medical expenses even if he were still working full-time, unfortunately, but the possibility of curing his MS is one that he cannot pass up.

Our hope is that this treatment will stop his M.S. progression and maybe even reverse the damage already done. His son and family and friends are all praying that this is the answer we've been waiting for and that we can have the Jim we love back and healthier than he's been in over a decade.

More about the procedure: "Dr. Richard K. Burt performed the first hematopoietic stem cell transplant (HSCT) for a multiple sclerosis (MS) patient in the United States at Chicago’s Northwestern Memorial Hospital. [...] Burt and his colleagues published the results of their newest HSCT study earlier this week in the Journal of the American Medical Association. Their results show that HSCT could be the first MS therapy to reverse disability. Though the study group was small, the results have experts hopeful. For this trial, 151 patients underwent a stem cell transplant. First, their immune systems were tamped down using low-dose chemotherapy. Then, doctors used HSCT therapy, involving an infusion of the patients’ own stem cells, previously harvested from their blood, to reboot their immune systems. After a short stay in the hospital, the volunteers went about their normal lives, needing no “maintenance” drugs. Over the next several years, the volunteers were periodically given a series of tests to measure their disability. One test, known as the Expanded Disability Status Scale, or EDSS, measures cognition, coordination, and walking, among other things. Participants underwent MRI scans and completed questionnaires to measure their overall quality of life. The researchers found that at two years post-transplant half of the patients showed a marked improvement in disability. Of the patients who were followed for four years, more than 80 percent remained relapse-free." (Quotes taken from Stem Cell Transplants Offer First-Ever MS Treatment That Reverses Disability Written by Jeri Burtchell and published on January 22, 2015 for Healthline.com.)

If you have M.S. or love someone who does, please look into the research that Dr. Burt is doing at Northwestern. He's been published in several noted medical journals, and you can google his M.S. HSCT trials to see some of the results so far. Although it is still in the clinical trial stage, and there are significant risks, the possibility of a cure for Multiple Sclerosis (or at least stopping the worsening of symptoms or relapses) is more than we ever could have hoped. Thank you for reading this, and we truly appreciate anything you choose to give.

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Organized by

Emily Pickart

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