Mark Shultz, Ph.D – BBDF’s first graduating doctor

Your generous donations are supporting inspiring and promising researchers who are committing their careers to finding a cure for Batten disease. Mark Schultz is one such researcher who recently graduated with a Ph.D. with the help of BBDF funding in partnership with Batten Disease Support and Research Association (BDSRA). Mark has and will continue to devote his career to finding a cure for Batten disease. Read Mark’s story below.

My first exposure to juvenile Batten disease occurred during an undergraduate neurobiology course at Wartburg College when I was assigned to write a paper discussing the current status of juvenile Neuronal Ceroid Lipofuscinosis (JNCL, juvenile Batten disease) research. I recognized that there were a lot of unanswered questions on the basic function and location of juvenile Batten disease protein, CLN3, preventing the development of effective therapy. One year later, while applying to graduate schools in medical research, I recognized the name of prominent JNCL researcher, Beverly Davidson, Ph.D. My interest in JNCL was high. I sought out a position in Dr. Davidson’s laboratory at the University of Iowa and began my graduate career as a JNCL researcher.

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June 2013: BBDF partners with orphan drug specialists to establish path to treatment

We are in an exciting and hopeful place in Batten disease research history. Not very long ago, scientists were unsure of the genetic cause of juvenile Batten disease, why cellular processes go awry, and, because of this, were at a loss as to how to fix the problem. Today, we can identify mistakes in DNA that cause the disease. We understand much of what goes wrong and are even able to slow the disease in our animal models! With your support and funding from Beyond Batten Disease Foundation, researchers have identified three potential compounds that may be used to treat children with juvenile Batten disease and are looking for more.

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March 2013: Passion is our driver. Strategy is our compass.

Passion is our driver. Strategy is our compass. With your support, Beyond Batten Disease Foundation (BBDF) has developed a dynamic plan to diagnose and prevent juvenile Batten disease while at the same time investing in the most promising research to treat children and families living with the disease. Since the foundation’s inception in August 2008, we have made exciting progress. With help from donors, we have 1) developed an easy and inexpensive test to prevent Batten and hundreds of other rare and devastating diseases, and 2) invested in research projects and strategies that are accelerating progress toward a cure.

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Beyond the Valley of Death: A Strategic Path Toward a Cure for Batten disease

Beyond Batten Disease Foundation is spearheading a unique, cohesive strategy that incorporates independent scientific resources and collaborations with related funding organizations to drive research into Batten Disease. Watch the following video to see how Beyond Batten Disease Foundation is working with academia, the pharmaceutical industry, and government agencies to cross the “Valley of Death” between initial scientific discoveries and meaningful progress toward treatments and cures.

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