A History of the HLA Registry Foundation
…and a Glimpse at Bergen Community Regional Blood Center, aka Community Blood Services
This is the story of the New Jersey HLA Registry Foundation, Inc., of River Edge, New Jersey, as seen through my eyes. You could say that it is the story of MY involvement with the Registry. It is based on my experiences as a volunteer-turned-employee of the Registry of more than 16 years. It was written after I left the Registry, and in fact, after the Registry was dissolved as a charitable and business entity. The organization no longer exists. It’s operations were turned over to another organization, the Bergen Community Regional Blood Center, located in Paramus, New Jersey, in the Summer of 2002. I believe the pages that follow contain viewpoints, insights and commentary that could only come from an insider who was witness to the day-to-day workings of the organization. With the publication of this website, I have decided to share this story with the rest of the Internet community. Everything you will read here is true. Factual items come from company documents or memos, documents filed with the Internal Revenue Service (which are open to public inspection) or from my own firsthand knowledge. When I’m expressing my opinions or assumptions, I will clearly identify them as such. The views expressed on this website are my own, and do not represent the views of any of the other individuals or organizations mentioned here.
The HLA Registry Foundation, founded in 1986, was one of the earliest bone marrow donor registries in the United States, and for much of it’s existence was the largest registry in the country, and among the two or three largest in the world. It’s purpose was to recruit and test potential bone marrow donors, and build a repository of their medical data. Patients in need of a life-saving bone marrow transplant who required a genetically compatible donor could search this file. Our work made it possible for hundreds of patients to receive bone marrow transplants. Today, patients continue to benefit from the work we did, since the nearly quarter-million donors we recruited are part of the National Marrow Donor Program’s searchable database, which contains millions of potential donors. One unique aspect of our organization was that we were not part of a blood bank, medical center, the Red Cross, etc., as were nearly all of the other donor registries, here and overseas. Recruiting donors was virtually all we did.
With the exception of a few persons related to this story who are now deceased, I will refer to individuals only by their initials or the position they held or currently hold. I’m “K.L.”, and my position at the Registry was Manager of Information Systems.
The history I present here takes the form of a collection of vignettes and anecdotes, more than it does a continuous and complete historical account. Perhaps that will change a bit as I add to the site in the future, possibly including the perspectives of others who have been involved with the Registry or the Blood Center in the past.
Please feel free to link to this site. I would appreciate an e-mail letting me know which sites have added links to this site. Permission is granted for the non-commercial use of anything contained herein, but please let me know what your intended use is. I reserve the right to use any material you submit as I see fit, so if you have any concerns about what you are providing, please discuss it in a preliminary e-mail. If confidentiality is a concern when submitting information for inclusion on this site, I promise that your privacy will be respected. Just don’t ask me to call you “Deep Throat”.
Finally, this is not the website of the New Jersey HLA Registry Foundation, Inc., which was located at www.hlaregistry.org, but which no longer exists. This site is not connected with or endorsed by the Bergen Community Regional Blood Center, Community Blood Services, or the Community Blood Services Foundation, all of which are located in Paramus, New Jersey.
FACTOID: AT THE TIME OF HER DEATH IN 1987, CLARE BOOTHE LUCE LIVED IN THE WATERGATE COMPLEX IN WASHINGTON, DC
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