The MPN Education Foundation is a 501(c)(3) non-profit organization run by volunteer MPN patients. It was incorporated in early 2004 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 MPN Research Center, which unfortunately died when she did in 2003. Our co-founder, Joyce Niblack(who passed in 2009), was a patient volunteer for Dr. Gilbert’s center and Editor of the MPD VOICE newsletter.
The Foundation’s first major project was to co-sponsor the Mayo Clinic Comprehensive Cancer Center/MPN 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. That issue (Volume 1, Issue 1) was followed by an issue dealing with Myelofibrosis (Volume 2, Issue 1), announcement of the 2007 conference (Vol. 2, Issue 2), then Volume 3, Issue 1 focussed on results of a survey on fatigue and Quality of Life in the myeloproliferative
disorders. This was the last newsletter published.
The patient conferences, now called the Joyce Niblack Memorial Conference are scheduled every two years at the Mayo Clinic in Scottsdale.
Dr. Tefferi’s vision has expanded for our Foundation and the mission goals now include
- Information, education and support
- Patient and MD conferences
- Doctor-patient sharing
- Doctor/doctor/researcher networking
- Facilitating patient participation/accrual in clinical studies and surveys.
All of these efforts are designed to
- Advance research
- Educate patients and caregivers about our diseases
- Improve quality of life and care of MPN patients
- Help raise funds for MPN research
- Support the MPN community
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:
- David E. Alexander (PV)
- Antje Hjerpe (ET)
- Laurie Hopman, MD (ET/smf)
- Ruben Mesa, MD
- Jo Ann Mannino (PV)
One of the Foundation’s goals is encouraging MPN researchers/experts to take advantage of the MPN-Net online support group with approximately 3000 members from around the world as well as patients who come to www.mpninfo.org for information. 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 MPN 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.
This breakthrough discovery has lead to many new trial drug therapies for non-CML MPNs. CML was the first of the myeloproliferative neoplasms to benefit from the discovery of the bcr-abl tyrosine kinase inhibitor, Gleevec which changed the face of treatment for CML patients.
In a third study announced on MPN-NET, members of MPN-NET online support group participated in a Quality of Life Survey designed by MPN experts at Mayo, Harvard and MD Anderson designed to help the experts better understand the effects of fatigue on quality of life for those suffering from an MPN. The citation for the published results is:
Ruben A. Mesa, Joyce Niblack, Martha Wadleigh, Srdan Verstovsek, John Camoriano, Sunni Barnes, Angelina D. Tan, Pamela J. Atherton, Jeff A. Sloan, Ayalew Tefferi, 2007. The Burden of Fatigue and Quality of Life in Myeloproliferative Neoplasm Disorders (MPNs): An International Internet-Based Survey of 1179 MPN Patients. _Cancer_, 109 (1), pages 68-76, January 2007.