You don’t have to be a superhero to save a life.
The Junior League of Santa Barbara, in conjunction with the National Marrow Donor Program (NMDP) and its newly renamed Be The Match registry, is giving everyday citizens the opportunity to prevent the death of someone with a life-threatening, marrow-affecting disease such as leukemia or lymphoma. On Saturday, April 18 from 10:30 a.m. to 3:30 p.m., the two nonprofit organizations will host the Santa Barbara Marrow Registration and Blood Drive at De La Guerra Plaza.
The event’s goal, in addition to collecting blood donations, is to add new members to the Be the Match registry, a confidential medical information database that is used to match possible bone marrow donors with those in need of transplantation. A person doesn’t even have to endure a finger-prick to become apart of the registry; an inner-cheek swab is all that’s needed to collect and catalogue donor data. Ideally, a person in need of a life-saving transplant would simply find a suitable donor within their families, as both donor and recipient must share a common tissue type for the procedure to be successful; racial and ethnic heritage are also extremely important factors in determining a match. However, according to NMDP literature, only 30 percent of possible recipients are able to secure a viable donor within their family, and the remaining 70 percent must search for an unrelated donor whose tissue type matches theirs as closely as possible. And every day, over 6,000 men women and children in need of transplantation search the database on their own time, hoping to discover a viable donor.
A significant obstacle faced by those in need of a bone marrow donor is that there are simply very few ethnically diverse members within the Be the Match registry. In fact, 73 percent of the seven million U.S. registry members are Caucasian, while Latino and black members only make up 18 percent. In a concerted effort to raise the number of Latino registry members, the Junior League is attempting to publicize the event in Latino-heavy areas of Santa Barbara, such as area churches and organizations, in the hopes of recruiting volunteers with more diverse racial backgrounds. The organization has also contacted and coordinated with the UCSB’s Latino-based fraternity Lamda Theta Pi in order to spread the word among college students.
The Junior League has been hosting marrow registration drives for the last 20 years, and its volunteers see the event as not only a way to help those in need across the country, but also as a way to unite Santa Barbarans in a common, positive cause. “Training volunteers and supporting the community are a valuable part of the Junior League experience,” said Martha Townsend, president of the Junior League of Santa Barbara. “And we believe the Marrow Drive is an important project for our new members to engage the Santa Barbara community.”
Volunteer Holly Collier articulated the growing and pressing need for registry volunteers, citing the NMDP’s recent achievements as well as addressing the growing demand for donors, “Medical advances are making transplants available to more patients of all ages,” she explained. “Recently, the NMDP reached a milestone of having provided 35,000 transplants, with a record 5,000 transplants in just 13 months. Changes in clinical practice, including more precisely matched donors and patients, more potent drugs to combat complications, and more transplant options for patients (bone marrow, umbilical cord blood or peripheral blood stem cells) have made it possible for increasingly more patients, including older patients, to receive transplants. As the demand for transplants increases, we need everyone to step forward now more than ever before and join the registry, donate cord blood, make a financial contribution, and volunteer.”
One volunteer, Santa Barbara resident Jeff Bochsler, did step forward. During a registration drive BBQ over three years ago, Jeff donated his DNA information to be included in the national registry. As a Team in Training coach at the time, Jeff was readily familiar with strength and struggles exhibited by those with leukemia and lymphoma. He also had a grandfather who had lived and coped with leukemia. According to Jeff, his commitment to the bone marrow donation process was solidified during the next year-and-a-half after he donated while he continued to coach marathon running to Team in Training participants. “As I coached, I constantly saw people who were in remission,” he said. “That had a dramatic impact on me because they were all young, like me.”
Then one day in January 2008, Jeff received a call from a doctor at the City of Hope National Medical Center (an ambulatory and in-patient cancer treatment facility in Duarte, California) who informed him that he had been matched with a person in need of transplantation and that he had been selected as a donor. Without hesitating, Jeff decided to go through with the procedure, which he learned was a straightforward and relatively painless process. Contrasting to the common notion that bone marrow donation is an invasive and excruciating practice, Jeff said his donation experience, “Really wasn’t bad at all. And it was nothing compared to what Jason had been going through.” He also said that his dedication to the process was based on a simple line of logic: “If I had given up, if I had decided to not go through with it, I would essentially have been saying that it was okay for someone to die.” In order to donate the necessary cells needed for transplantation, Jeff spent the better part of two days hooked up to a machine that filtered out of his blood the cells needed to promote marrow growth in the recipient. “It was a very minimal recovery process,” Jeff said, “I was able to go home and sleep after both sessions without any problems.”
At the time, Jeff had no idea who would be receiving his life-saving stem-cells (which would be injected into the marrow of the recipient), as it is the NMDP and City of Hope’s policy to keep both donor and recipient names confidential for a length of time for privacy and safety purposes. But a year later, Jeff learned that his donation had successfully treated the leukemia of 36-year-old Jason Huffman, a father of two living in Dallas, Texas. During a dramatic and heartfelt ceremony in January 2009, Jeff and Jason met each other for the first time in front of the crowd at the Mia Hamm and Nomar Garciaparra Celebrity Soccer Challenge, which raises money for hospitals and non-profit organizations. Since then, the two have remained in contact and gotten together several times.
Jason, who is a school administrator, could not have been more appreciative of Jeff’s decision to donate. “It’s a lot to ask of someone,” Jason said. Since receiving Jeff’s marrow-producing stem cells, Jason’s leukemia has gone into remission and has remained so for a year. According to Jason’s doctors, the three-year mark will be a deciding factor of whether the transplantation was a success or not. But Jason is simply happy to be alive, and is taking it one step at a time. “I just wanted to make it through the first year, which I have, and we’ll just have to see how it goes from there. Right now, I’m happy my kids still have a dad.” Jason also spoke of the need to increase awareness of minority shortages within the registry, “Now, I feel it’s important to get the word out about the lack of minority representation within the registry. Most people don’t even know about the deficiency, much less what to do about it.” As this reporter spoke to Jason, he was on his way to meet Jeff in Abilene, Texas to watch a college baseball game that Jeff’s brother was playing in; Jason was looking forward to introducing Jeff to his wife of 12 years and two children, aged eight and five.
For more information about the National Marrow Donor Program and the Be The Match registry, go here.