----- Original Message -----
From: Dave Frohnmayer
To: Ilja Mrek
Cc: Lynn Frohnmayer
Sent: Friday, August 19, 2005 3:25 AM
Subject: Bone Marrow Transplantation for Fanconi Anemia

August 18, 2005

To Whom it May Concern:

For purposes of information, I am David Frohnmayer, President of the University of Oregon, Founding Director and Vice President of the Board of the Fanconi Anemia Research Fund, Inc.
I also served as a Founding Director of the National Marrow  Donor Program in the United States. I write in response to concerns about the special treatment protocols required in bone marrow transplantation of patients with a rare disorder, Fanconi anemia.

I wish in the strongest possible terms to assert the importance of skilled and specialized treatment for Fanconi anemia bone marrow transplants. It is now well understood in the international scientific community of marrow transplantation that Fanconi anemia patients present unusual problems that require special protocols and special care. Treatment of an FA patient using a standard bone marrow transplant protocol for either a related or unrelated transplant almost uniformly results in death of the patient. Specialized treatment protocols dramatically reducing the use of radiation and chemotherapy have been developed in a few specialized transplant centers, and are the subject of careful examination in the Clinical Care Guidelines, Second Edition 2003.

I personally would not recommend bone marrow transplantation for a Fanconi anemia patient outside of a small handful of centers with extensive experience in transplanting this disorder. This recommendation is based upon the needs of the patient for highly skilled nursing care for  in-patients, and the specialized out-patient monitoring that is crucial for a successful outcome. My two decades of experience with the transplantation community and the leading experts in Fanconi anemia science generally lead me to this conclusion. I hope this is helpful to you in your deliberations, and I would be pleased to respond to your inquiries on this subject.

Yours very truly,

David B. Frohnmayer
Vice-President, FARF Board of Directors