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The CMPD Education Foundation is a 501(c)(3) non-profit organization run by volunteer MPD patients. It was incorporated in early 1994 at the urging of Dr. Ayalew Tefferi of Mayo Clinic (Rochester). The initial thrust of the Foundation was to continue the information/education/support goals of Dr. Harriet Gilbert through her MPD Research Center, which unfortunately died when she did in 1993. Our co-founder and President, Joyce Niblack, was a patient volunteer for Dr. Gilbert’s center and Editor of the MPD VOICE newsletter which is being carried on by the CMPD Education Foundation.
The Foundation’s first major project was to co-sponsor the Mayo Clinic Comprehensive Cancer Center/CMPD Education Foundation patient conference held at Mayo Clinic Scottsdale February 25-27, 2005. This is the third such conference as co-founders Joyce and Bob Niblack worked with Mayo on the 2001 and 2003 conferences as well.
The Foundation’s second major project was publication of the JAK2 issue of the MPD VOICE newsletter and work is in progress for the fall issue which will focus Myelofibrosis and the winter issue focusing on the ongoing Quality of Life Survey.
While the patient conferences are ordinarily scheduled every two years, one of our medical advisors, Dr. John Camoriano (Mayo Clinic Scottsdale) suggested moving the next conference up to the fall of 1996 since there should be a lot to talk about.
Dr. Tefferi’s vision has expanded for our Foundation and the mission goals now include
- Information, education and support
- Patient and MD conferences
- Newsletters and other publications
- Doctor-patient sharing
- Doctor/doctor/researcher networking
- Facilitating patient participation/accrual in clinical studies and surveys.
Designed to advance research, knowledge about our diseases, develop new drugs for FDA approval, improve quality of life and care of MPD patients, etc.
- Help raise funds for JAK2 and other research
- MPD community support for both education and research
- Patient advocate efforts in seeking government and private funding for MPD Research
The Scientific Advisory Board for the Foundation comprises:
- John Camoriano, MD, Mayo Clinic, Scottsdale, Arizona
- Joachim Deeg, MD, Fred Hutchinson Cancer Research Center, Seattle, Washington
- Claire Harrison, MD, Guy's and St. Thomas' Hospital, London, UK
- Ruben Mesa, MD, Mayo Clinic, Scottsdale, Arizona
- Ayalew Tefferi, MD, Mayo Clinic, Rochester, Minnesota
- Srdan Verstovsek, MD, MD Anderson Cancer Center, Houston, Texas
The Board of directors comprises:
- Antje Hjerpe (ET)
- Laurie Hopman, MD (ET/smf)
- Ruben Mesa, MD
- Robert Niblack
- Robert Swanson (PV)
- Ian Sweet (PV)
One of the Foundation’s goals is encouraging MPD researchers/experts to take advantage of the MPD-Net online support group with approximately 2400 members from around the world as well as patients who come to www.mpdinfo.org for information or anyone those who use net resources know that does not have access to the net through information from other patients or doctors. The first group to take advantage of this opportunity was led by D. Gary Gilliland, MD, PhD at Harvard who accrued patients for their study that screened blood samples and DNA swabs from 345 on-line participants. The results yielded identification of the JAK2 mutation expressed by many MPD patients. This has been reported in the literature by Dr. Gilliland’s group and confirmed by at least 6 independent other groups in the US and Europe. That study is closed and no longer accruing patients.
This breakthrough discovery is expected to lead to targeted therapies for non-CML MPDs. CML was the first of the myeloproliferative disorders to benefit from the discovery of the bcr-abl tyrosine kinase inhibitor, Gleevec which changed the face of treatment for CML patients. We stand on the brink of our own targeted therapies.
The JAK2 mutation discovery is the subject of the Foundation’s first MPD VOICE newsletter. For a complimentary copy, email ian.sweet@homemail.com.au
In a third study announced on MPD-Net, members of MPD-NET online support group have been participating in a Quality of Life Survey designed by MPD experts at Mayo, Harvard and MD Anderson designed to help the experts better understand.
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