THE LIVING GIFT OF LIFE
The Continuing History of the National Marrow Donor Program
by
CAP PARLIER
CHAPTER OUTLINE:
Chapter 1: The Science
A. Disease
1. Leukemia
Acute variants
Chronic variants
2. Other blood related diseases
3. Non-blood diseases
4. Collateral applications
B. Research
1. HLA matching and immunogenetics
Dr. Robert A. Good, MD
2. Marrow transplantation experimentation
Dr. E. Donnell Thomas, MD - Nobel Laureate
C. Treatment
1. Bone marrow transplantation - the process
Autologous
Related donor
Unrelated donor
2. Other blood related diseases
3. Application to other diseases treatments
Chapter 2: The Laura Graves Story
A. Laura's early years
B. Laura's illness
1. Symptoms
2. Diagnosis
3. Available treatments
C. Family frustration
1. No related donor
2. Lack of unrelated donors
3. The Search
D. Laura's transplant
1. Transplant - her first 100 days
2. Relapse
E. The End of the beginning
Chapter 3: A Father's Commitment to Change
A. Laura Graves Foundation - Bob Graves' commitment to his daughter's legacy
1. Donor recruitment
2. Illumination of the need
B. Mobilization of government
1. Pitching the case
2. Meeting Senator Laxalt - 1981
3. Construction of legislation
C. Gathering support
1. Private & personal negotiations
2. Reaching out to others
3. Stomping the halls.
4. A critical alliance with ARC, AABB, CCBC and others.
D. Enabling legislation
1. Transplant Act of 1984
2. Laxalt-Paisley letter of 8.Nov.1984
3. NIH Concensus Conference - May 1985
4. Minneapolis Conference on unrelated donors - Nov 1985
5. Laxalt attaches funding to Navy allocation for registry
Chapter 4: An Organization of Service is Born
A. National Bone Marrow Donor Registry (NBMDR)
1. The charter & foundation principles
2. Medical standards
3. The board
4. The staff
5. The volunteers & donor recruitment
B. International association to broaden access
United Kingdom
France
C. Drawing cohesion and synergy to donor recruitment
D. Transplant Act of 1988
1. NBMDR supervision transferred from the Navy to NHLBI
E. Independence
1. NBMDR becomes NMDP - 24.Jun.1988
2. Connections are defined.
Chapter 5: A Legend Pitches Into Help
A. Admiral Elmo Russell 'Bud' Zumwalt, Jr., USN (Ret)
B. The Zumwalt Family experience - My Father, My Son.
C. Spokesman, leader, counselor and diplomat
1. Elected Chair of NMDP Board - 16.Nov.1989
2. Navy and DoD support
3. Congressional connections
D. The Marrow Foundation
1. The Vision
2. Forming a dedicated organization
3. Finding the right people
4. Spreading the word.
Chapter 6: Common Purpose Brings Uncommon Experience
A. Board directors must have a connection
B. Bart Fisher
C. Larry Atlas
D. David Frohnmeyer
E. Cap Parlier
F. And, so many others
Chapter 7: Growing Pains
A. Pressure of collateral use - what is the database?
1. The Gulf War and potential defense demands.
2. Expansion of use
3. The struggle between disclosure and ethics
B. Finding critical mass
1. Heart of America
2. HLA Registry of New Jersey
3. Life Savers & Rudi Brutuco
C. Maturing the organization
1. Frohnmeyer Ad Hoc Reorganization Committee
2. Formalization of the structure and operating processes
3. Staff changes
4. A new chief executive - Dr. Craig Howe, MD
D. The system
1. The STAR(r) system
2. The network
3. Information technology
4. Local enthusiasm
E. Diversity
1. Equal access
2. HLA typing and ethnic relationships
3. Harnessing ethnic diversity
4. Minority Affairs Committee
Chapter 8: The World Connection
A. Companion relationships
1. UK
2. France
3. Germany
4. Canada, Australia, Japan, et al
B. Chernobyl, Soviet Union and CIS
C. The world network
1. International Bone Marrow Donor Registry (IBMDR)
2. Expanding world demand
Chapter 9: The Government
A. Representative C.W. 'Bill' Young
1. Family connection
2. Chair, House Ways and Means Committee
3. Leading legislator
B. Transplant Act of 1994
1. Competitive contract
2. Office of Patient Advocacy
3. The changing budgetary environment
4. Oversight transferred from NHLBI to HRSA
C. National mandate
Chapter 10: Transition
A. Celebration of Success
1. Rapid milestone achievement
2. Reaching for equal access
B. Service to patients and donors
1. Information dissemination
2. Privacy & pressure for meetings between patients and donors
C. The donors
1. Donor retention
2. Maintenance of contact information
3. Continuous renewal
D. Competition
1. American Red Cross
Chapter 11: Medical Knowledge Brings More Change
A. Immunogenetic technology and knowledge
1. Increasing HLA resolution
B. Stem cells and cord blood
1. Involved in basic medical research
2. Potential for the ultimate cure.
3. Trying to understand how NMDP can best serve the need.
C. Graft Versus Host Disease (GVHD)
1. Transplant cell rejection
2. Pharmaceuticals to reduce rejection
3. Higher HLA matching reduces rejection
4. Research at various levels to reduce or eliminate GVHD
Chapter 12: Groping with Change
A. The lightning speed of change
1. Hoped obsolescence
2. Other products and services
3. Immediate response
B. Governmental support?
1. Alternatives
2. Replacement
C. Changing attitudes
1. Wild, Wild Web
2. Direct consumer involvement
3. Higher and higher expectations
Chapter 13: The Future
A. Strategic planning
B. A view of the future.
C. What next?
This page was last modified:
18.March.2002
