MJFF makes no bones about being entreprenurial. They are all about business and science, and consider Michael enough patient for the rest of us. When I say 'they', I don't mean all of them - i don't know how each person feels. The co-founder, Debi Brooks, had a policy of no patients at scientific meetings. With the celebrity factor, perhaps patient input is too overwhelming.

There has been some headway made at including patients at meetings. Nevertheless, they totally "get it " in terms of innovation and looking at ways to get treatments started and over the initial expensive gap until the treatment is picked up by a larger company. And they have their finger on the pulse of the patient perspective. I think they are doing all the right things. The new electronic records software is another example of this, although they are not the first to try it.

They have a patient that is worth big money and he is bringing it in. This benefits the whole community - but with patients there is always a human, compassion factor that is missing when it's all about money, not to mention the knowledge that only patients have, particularly in how they measure progress in cinical trials. There is no solution to this, really.

As a side note: if you missed the announcement, one of the foundation's key persons, a former vice president, Joyce Oberdorf, is now the new head of NPF. I am looking forward to seeing what direction NPF will take under her leadership.

paula