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The newspaper of The Johns Hopkins University March 1, 2004 | Vol. 33 No. 24
 
Aspiring Matchmakers

Type for Lifers, clockwise from left: Lai Wong, April Puscavage, Mike Grunwald, Leon Charkoudian, Ryan Coller, Rachel Brennan and Sonia Singh.
PHOTO BY HPS/WILL KIRK

Student-run program has added 2,500-plus people to marrow donor registry

Greg Rienzi
The Gazette

At any given moment, roughly 3,000 individuals nationwide seek a lifesaving marrow donation from someone who is not a blood relation. However, due to the lack of compatible donors, only 20 percent to 30 percent of this group will ever receive a transplant.

Allen Chen, assistant professor of pediatric oncology at the School of Medicine and director of pediatric bone marrow transplantation at The Johns Hopkins Hospital, says that finding a suitable donor is often a matter of life and death — and involves a sizable measure of luck.

"[Marrow transplantation] really is a second chance for many patients who otherwise have incurable diseases," Chen says. The donation of healthy marrow can cure many diseases, he says, including leukemia, lymphoma and aplastic anemia.

On behalf of patients in search of this lifesaving match, one Johns Hopkins student group is doing its part to boost the odds of success.

Since 2000, Type for Life has organized an annual marrow registration drive on the Johns Hopkins medical campus and in the East Baltimore community. The group's mission is to expand and diversify the National Marrow Donor Program Registry and give those in need a better chance of finding a donor. In the case of leukemia patients, for example, 70 percent need to find a suitably matched marrow donor outside their families.

To date, the group has added 2,518 names to the national registry.

The annual drive — organized by students at the schools of Medicine, Nursing and Public Health — provides free and convenient registration with the National Marrow Donor Program. To cover the medical costs of the weeklong campaign, the group mounts an extensive fund-raising effort each year.

Type for Life's fifth annual marrow registration drive will take place March 8 to 12 at various locations on the East Baltimore campus [see below].

Chen, who has been Type for Life's faculty sponsor since its inception, says the work of these student volunteers has been both admirable and incalculable in its value.

"These students put forth a tremendous effort year to year," he says. "They have recruited 500 to around 700 people each year, and have done a particularly good job of recruiting minority donors, of which there is the greatest need."

Rachel Brennan, co-chair of Type for Life, says that the group was founded because students saw firsthand the pressing need for marrow donors and wanted to do their part.

"So many patients come through the hospital in need of a transplant, and [before Type for Life] there was no drive at all," says Brennan, a medical student. "The group's founders knew there was a donor need on the national level and that every person added to the registry would help."

Brennan, now in her third year with Type for Life, says that the response has outweighed expectations.

Registration, which typically takes 20 minutes, involves a short health questionnaire and a finger stick to obtain a drop of blood. The sample, drawn by Johns Hopkins phlebotomists, is then used for a blood test called a tissue type, a profile of six different transplant genetic elements known as human leukocyte antigens.

Brennan says that due to the immense number of antigen variations, an equally huge database of tissue types is needed to find a suitable bone marrow or stem cell donor.

Of the 2,518 individuals the group has added to the national registry, for example, only 27 have been found to be suitable matches; of these, three have gone through with transplants.

A person's tissue type is entered anonymously into a national database that is searched daily on behalf of the thousands of patients needing a marrow transplant. If the type closely enough matches a patient's type, he or she may be contacted and asked to donate either bone marrow or stem cells. For marrow donation, part of a person's marrow is extracted from the back of the pelvic bone; stem cells are obtained through a blood donation procedure.

Brennan says there are two common misconceptions about Type for Life: that people donate marrow at the drives, and that by registering, one is obligated to donate.

"There really is no contract here. It is completely understandable that if a person is later asked [to donate] that they say at this time they cannot go through with the donation, whether because of their own health, life stress or some other reason," she says. "However, it is important that volunteers who sign up for the registry do so with the intent of donating."

Brennan says that more than one person is typically contacted when a match is made.

While registration is free to participants, the actual cost to Type for Life is $65 per person, in addition to various administrative expenses. To keep the drives going, the group mounts a fund-raising effort each year to secure the minimum $25,000 needed. Brennan says that the money has come from Johns Hopkins academic departments, the Alumni Association, personal donations and organizational grants.

The goal for the 2004 drive is to add another 700 names to the national registry, at least 30 percent of them minorities.

"The need for [registrants] is huge, but the need is even greater for minorities because each group has a different allele pool," Brennan says. "This is all about potentially saving a life. Even if you're not sure whether or not you want to donate, people are more than welcome to come down to one of the drive locations and find out more."

 

The Fifth Annual Type for Life Marrow Registration Drive

Monday, March 8. The Johns Hopkins Hospital, 8 a.m. to 5 p.m., Broadway corridor

Tuesday, March 9. School of Nursing, 8 a.m. to 5 p.m., Carpenter Room

Wednesday, March 10. School of Public Health, 8 a.m. to 5 p.m., Anna Baetjer Room

Thursday, March 11. School of Medicine, 8 a.m. to 5 p.m., 113 Preclinical Teaching Building

Friday, March 12. The Johns Hopkins Hospital, 8 a.m. to 5 p.m., Broadway Corridor

Registration requires a driver's license and the addresses and phone numbers of two contacts not living with registrant. Those typed previously may update contact information at 410-955-6347.

For more information, e-mail LeonC@jhu.edu, call 410-502-7716 or go to www.typeforlife.org.

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