National Bone Marrow Donor Program

Related Pages
Photo Albums
In 1992 Carolyn Shandle-Cobb, the daughter of Mentor Rotarian Cliff Shandle, was diagnosed with leukemia and told she would need a bone marrow transplant. Such transplants could only be accomplished when certain aspects of the donor's blood matched those same aspects of the recipient. There were two possible sources of marrow; first, from a family member who matched, where the odds of finding a match were one in four, or secondly from an unrelated donor who had registered with the US National Marrow Donor Program. At the beginning of 1993 there were 912,851 potential donors registered and the odds of finding a match from this source were said to be one in twenty thousand! When a family match was not found for Carolyn, Cliff and his wife Shirley did some research on marrow transplants in general and the US National Marrow Donor Program in particular. What they found was that the registry was essentially a numbers game. The more potential donors registered, the better the chance of finding a match. At this point, Cliff turned to his fellow Rotarians to ask that they pitch in to become possible donors. To get one's name on the Registry it was necessary to have a simple blood test, a test that could be administered by the Red Cross. However, the kicker was the cost of $45 for each test! The Board of Directors of the Mentor club listened to Cliff and decided to embark on a major campaign to increase the number of registrants and better the odds for Cliff's daughter as well as all other potential recipients. It was decided to recruit potential registrants, set up a testing drive with the local marrow donor center at the American Red Cross, and raise the necessary funds to pay for the cost of the test. As it happened, the donor center had community matching funds from the National Marrow Program that would pay half of the cost, bringing the Rotary obligation to $22.50 for each recruit. We began with a publicity blitz designed to sign up people to come to be tested. The initial testing was set for the Mentor Civic Center on May 23, 1993 and we expected about 500 potential donors. We were overwhelmed when more than 800 showed up! We were able to test only 740 during the allotted time and had to turn people away. We set up a second testing for June 23 and tested another 222 on that day. Our program was off to a great start, but it was only a start. Sadly, Cliff's daughter passed away in July, before she was able to get a marrow donation, from a match that had been identified. We vowed to make the recruitment and testing an annual affair. We have raised funds and sponsored a blood testing drive each year since 1993. The annual totals have not been as large as in the early years, as more of the willing and potential donors in our area get signed up. However, by 2005 Mentor Rotary has been responsible for adding more than 3,600 names to the national registry. Thus, we have made steady progress in our objective of helping the NMDP reach its goal of having enough potential donors so that, when a request for a transplant is made, an immediate positive response will be routine. While we are not there yet, by the end of 2005 there were more than 5.5 million registered potential donors, more than six times the 1993 total. In addition to the names we have added directly, the publicity we have generated for this program has caused other clubs in our area to sponsor testing drives. Of course, adding names to the Registry is not the whole story. From the 3600 names we have directly added to the Registry, 28, less than 1% have been called upon to donate marrow or blood stem cells. According to Linda Eckenbrecht, Program Coordinator for the US National Marrow Donor Program for Northern Ohio and Indiana,, these 28 names equate to more than 10% of the total number of marrow and stem cell donors from her region since its inception in 1987. These statistics bear witness to the fact that this work is nowhere near finished. Four Mentor Rotarians, Mike Ross, Rick Ferris, Elfie Roman and Marty LaMalfa, were among those 28 marrow or stem cell donors. Each of them underwent a relatively simple procedure whereby a small portion of their marrow was harvested to be transplanted into an otherwise terminally ill human being. Ask either of them about the tremendous feeling one gets from being given the chance to actually save a life. Ask them also about the feeling of kinship they achieve with the recipient. This unique bond was never more evident than in the words in a card sent to a donor from the recipient's family a few short months after the procedure had taken place. Since donors and recipients are never identified to one another until a full year has passed, the card was addressed simply to a donor number. Included among the profuse thanks were the words "There isn't a day goes by without us thinking of you." This is a project that requires a significant effort by club members, to run the fundraisers and to man the administrative functions on the day of the testing drives. However the rewards are immense and, in some cases, are almost immediate. A letter from Dean Peska, who was tested at our original drive in 1993, in some ways says it all. In his letter to Cliff Shandle dated November 10, 2001, he describes his experience as a donor in November of 2000 as follows: "Outside of my marriage to Ellen and the birth of my children, Margaret, Molly and Dan, this is the accomplishment that I am most proud of in my life. I now have a little of the feeling a mother feels with birthing a child, the feeling of giving life." Information on the US National Marrow Donor Program in the U.S. can be found at