Medical Research and Patient Engagement
William Krivit, M.D., Ph.D., was a pioneering pediatrician and immunologist at the University of Minnesota. He died in December, 2005 at the age of 80, having left an enduring legacy not just in clinical research but in relations with patients and their families. His colleague and collaborator, Dr. Elsa Shapiro, gave an overview of his career and contributions at a memorial service this January. Here are some excerpts from her presentation:
He was a visionary and leader, a caring physician, a zealous advocate, a humanist, and built bridges between the laboratory and bedside before the term translational research was coined. He was known in Minnesota for his humanism and strong advocacy for his patients (and all children, especially those who were disadvantaged), and internationally for his academic work, his leadership, his innovation, and passionate pursuit of his ideas....In 1974, Bill together with colleagues, developed the University of Minnesota Blood and Marrow Pediatric Transplant program – one of the first pediatric transplant programs in the country. He later founded the Children’s Cancer Study Group (CCSG, now known as COG). He was also instrumental in the founding of the Ronald McDonald House program. ...
In the field of lysosomal storage and related diseases he made important contributions including...
- the first Hurler disease transplant in the US
- the first transplant for MPS VI
- the first beneficial metachromatic leukodystrophy (MLD) transplant
- the first transplant for globoid cell leukodystrophy
- the first beneficial transplant for adrenoleukodystrophy in the US
- the first clinical trial funded by NIH to study the value of bone marrow transplant for storage diseases
He loved his patients…he called them ‘my precious angels.’ He was always compassionate with the kids who were sick; he teased them in a loving way… Here is a quote from a parent of a child …..
One of my favorite memories is how Dr. Krivit would "light up" the room every morning. He would come into our darkened room very early in the morning and flip on the brightest light. Darcee hated this and one day decided to get back at him. On this morning when he awakened her by "lighting up" the room, she took careful aim with her shooting ice cream cone and hit him dead center. This upstanding, dignified 70 year old doctor stumbled about the room dying his slow death and finally crumbled to the floor in the corner. My daughter couldn't have been prouder. She soon learned however that Dr. Krivit was like a cat and that he had many more lives yet to live....Bill encouraged parents to start the MLD Foundation so others affected with MLD would have a support system and wouldn't have to suffer alone. He helped put on the first family conference in 2000 and was a speaker at subsequent conferences. At another family meeting, several of the parents of boys with ALD had T shirts with the numbers 2397 on the backs. Most of the parents knew what those numbers meant, but of the professionals at the meeting, only those from Minnesota knew that 2397 was Bill’s pager number....
Bill was one of the seminal thinkers in this field; a visionary who channeled his gifts of intellect and passion to further the research in inherited metabolic diseases. Some people thought that he was overzealous; but the end result of his intellect and passion was that his ideas shaped the field and provided the impetus for forward movement in the treatment of these diseases. He spent a lifetime working for the benefit of children and the advancement of science. Bill was truly a humanitarian, a teacher, and a scientist whose work will continue to drive the field ahead. We will miss him greatly but his spirit will continue to be felt in those whose lives he touched.
The web site of the MLD Foundation is a model for the involvement and mutual support of the parents of children with devastating diseases. The home page lists the important resources offered by the Foundation:
- Compassion will take you to the MLD Family where you can connect with others.
- Awareness is where you will find what is being done to increase knowledge of MLD and how you can help.
- Research describes the latest in efforts to treat and cure MLD.
- Education leads to MLD-101 which presents a comprehensive, yet very readable, layman's overview of MLD.
The home page also contains a photograph of Bill Krivit, with a link to an appreciation of his contributions to the field and the families that he affected so strongly. He stands as an outstanding exemplar of the engaged practice of scholarship in the medical field, a pioneer in research, in translating that research into clinical practice, and in connecting with patients and their families every step of the way.