RE: Dr. Lindor's e-mail regarding NIH e-mails

[Guest guest]

Interesting. So we should be contacting our US Senators & Representatives to increase research funds for PSC. Marie

To: From: rossheil82@...Date: Wed, 2 Jul 2008 11:31:50 -0700Subject: Dr. Lindor's e-mail regarding NIH e-mails

Here is the e-mail i received from Dr. Lindor regarding the NIH e-mails we have all sent:

Ross, I thought it would be nice if you could help post this on a site for the PSC community that provides some thoughts for directing their advocacy efforts.

"Dear PSC members, as you know we were very disappointed with the results of our High Dose URSO study for PSC but remain committed to finding a safe and effective therapy for PSC. Data and samples collected in this study will certainly help with this effort. Dr. Robuck and the NIH have been highly supportive throughout this study and are truly partners with you and the investigators in seeking a treatment for PSC. Efforts on your part directed to your federal legislators to encourage support of these efforts through the NIDDK branch of NIH are important and often effective. The NIH cannot lobby Congress for support but Congress can direct the NIH to support particular initiatives and projects as well as appropriate funds for these projects; hence the importance of the PSC patients raising awareness of the disease with your elected officials. Working together we will find the treatment we so need for

PSC!

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