Too Great a Loss!

In November 1942, brothers George, Frank Joe, Matt and Al Sullivan were all killed when their Navy ship was torpedoed by a Japanese sub during World War II. The loss of these five brothers grabbed the attention of the nation and began a process that led the U.S. to develop Department of Defense Directive 1315.15. This directive is more commonly known as the “Sole Survivor Policy” and it was a concept many of you may remember from the Academy Award winning film Saving Private Ryan. This directive is intended to prevent a family from losing all of their children. The country felt that that was too great a loss for a family and the government took action to prevent it. I have six wonderful kids and I can’t fathom the pain of losing one child let alone all of one’s children. That is the situation the Kulsrud family of Grace City, North Dakota finds itself in.

KulsrudJay and Laura Kulsrud have three boys.  Their names are Lane, Tanner, and Ty. They are 13, 11 and 8 respectively. During the fall/winter of 2011/2012, Lane started to experience slurred speech, stumbling and other neurological symptoms.  After several tests they found out that he has a condition called PKAN, a form of NBIA (Neurodegeneration with Brain Iron Accumulation).  Basically, iron accumulates in the brain resulting in nerve damage and several debilitating symptoms.  PKAN is caused by two parents being passive carriers of a mutated gene.  There is no treatment to remove the iron from the brain.  Symptoms typically begin in childhood and are progressive, often resulting in death by early adulthood.  Because the disease is genetic, they tested the other two boys who were 9 and 6 at the time.  There was a 25% chance they would have PKAN, 50% chance they wouldn’t and 25% chance they would be passive carriers like their parents.  Test results came back positive that Tanner and Ty also have the disease.  Since that time, the disease has begun in Tanner and he has developed slurred speech and has a very difficult time doing everyday tasks such as eating, dressing himself and playing.  Lane suffers from the same symptoms.  They still haven’t noticed any symptoms in Ty who is now 8.  Words cannot explain how hard this situation must be for this family. But there is some hope.

Last night, Laura Kulsrud called Robin Anderson, one of our marketing consultants, and let her know that the FDA recently reviewed an IND (Investigational New Drug) that has corrected the symptoms in mice and returned them to their normal state.  It was looking very positive for the boys to start taking the drug, however, at an FDA hearing last week they determined that they needed more clinical data from the drug company, Retrophin, which is based in New York.  Soon the Pivot team will be meeting internally to brainstorm ways we can assist this family and effort. We are working on our own, along with others, to see if we can stimulate the FDA to expedite access to these new medicines. Our blog post today is really a fishing expedition to see if any of our readers have ideas, contacts, or expertise that can help. If you do, please reach out to as soon as possible. Please also consider tracking their story at Since the Sullivan brothers tragedy, the Sole Survivor Policy has helped many families. Losing Lane, Tanner and Ty is too great a loss and perhaps together we can stimulate action that gives them a chance through this new drug.

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