Friday, August 7, 2009

The Art of Listening Award

As some of you know, I have a genetic muscle disorder called Hypokalemic Periodic Paralysis which technically is an "ion channelopathy". Because of this disorder I have had the great privilege to get to know Professor Doctor Frank Lehmann-Horn, Head of the Department of Applied Physiology, Ulm University, Ulm Germany. Dr. Lehmann-Horn is without reservation the top expert in the world of ion channelopathies.

In a field where patients often deal with researchers and physicians who are so clinically "detached" as to be only one step above androids a man like Frank Lehmann-Horn is a treasure.

That's why when the Genetic Alliance announced that it was creating an "Art of Listening" Award I was so happy to write a letter of nomination for Frank Lehmann-Horn. While I was unable to go to Washington DC in July to see Frank receive his award, my friend and colleague, Linda Feld, also one of Frank's nominators, was there to tell the world how appreciated he is by the groups of patients we represent.

Dr. Lehmann-Horn said his wife could not believe anyone would give him an award for listening, and he thought it was a scam until he read the names of the three of us who nominated him. I am so happy that we were able to show him how much we value his kindness and humanity.

Thanks Frank, you are a true pioneer because you never mistake the map for the territory. Instead of rejecting any patient who doesn't conform to the old map, he constantly redraws the map in finer and finer detail.

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