A World of Research

A World of Research

 Doctors in Scotland told Jim Green that his family was only one of three in the world who had Niemann-Pick Type C when they delivered the diagnosis in 1989. He and his wife Susan have three children, and two of them were diagnosed. Now Jim, who spoke at our recent Michael, Marcia, and Christa Parseghian Scientific Conference, is one of the leaders of the fight against the disease. He’s been chairman of the Niemann-Pick Disease Group in the United Kingdom for 11 years.

 “If we’d had this meeting in 1989, I don’t think any of you would have been here,” Jim told the conference “What an amazing change. This meeting represents something absolutely phenomenal in terms of development. We have so much to talk about now that we didn’t have in those early days.”

 About a year ago, he was part of the organization of the International Niemann-Pick Disease Alliance with Argentina Canada, France, Germany, Holland, Italy, Spain, the United Kingdom and the United States. Since then, Switzerland, Japan, Brazil, Norway, Australia and China have become involved.

 Within the global effort, Jim said, the Ara Parseghian Medical Research Foundation stands out. “This is a shining light that goes out around the world,” he said. “There was always an emphasis on collaboration. They combined that with expertise and skill to produce phenomenal results.”

 Jim also reminds us that huge progress isn’t enough until we reach the cure.

“For families it is never fast enough,” he said. “We must never forget the urgency. “That’s our role, I think, as families, to keep that urgency up there on the agenda. I know the progress that’s being made, and I know we’re going to get there.”



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