Two sisters and their best friend have set off on a courageous journey across the country to visit over 190 cities with a goal of registering 50,000 blood marrow donors.Alex and Sam Kimura of Louisville, Kentucky are the co-founders of Sharing America’s Marrow (SAM), a grassroots movement created years after Sam was diagnosed at age 17 with the rare bone marrow disease severe aplastic anemia. Although the cure is a blood marrow transplant, Sam, now 22, has been unable to find a match.
With the support of Delete Blood Cancer DKMS, the two sisters and their best friend Taylor Shorten began their road trip in January to visit all 50 states at “churches, colleges, concerts and everything in between” to promote increased awareness of blood cancer and blood diseases, in addition to finding donors for Sam and thousands of others.
Despite a busy, sometimes exhausting tour driving across America in a van named Maggie, Sam was able to spend a few moments to talk more about their cause and how people can potentially save someone’s life.
Alex and I came up with the concept of Sharing America’s Marrow about a year ago. We had been doing bone marrow donor drives ever since my diagnosis of severe aplastic anemia in 2010, but we wanted to do something really big. We enjoyed registering donors and knowing that each person has the potential to be a life-saving match, we decided to create a campaign around that idea. SAM evolved into a 50-state tour around the country with our best friend, Taylor Shorten, to register 50,000 potential donors.
We are working with Delete Blood Cancer DKMS to register potential donors. Delete Blood Cancer provides us with registration supplies in addition to testing each donor kit in the lab for potential donors to be listed on the registry.
Related: Five Healthy Foods For Your Brain
A ‘Donor Jam’ is what we call a bone marrow donor drive. It’s an event where people fill out a registration form and complete a cheek swab to get listed as a potential donor on the national registry. ‘Bone marrow donor drive’ can sound intense, so we wanted to lighten it up a little and make it sound more fun, because saving lives is just that…fun!
Other groups can absolutely host a Donor Jam with us. With the help of Delete Blood Cancer, we can supply people with registration materials, training on how to register donors, flyers/promotional items to get the word out, etc. so that people can host their very own SAM Donor Jam.
In most cases, the success of allogeneic transplantation depends in part on how well the HLA antigens of the donor’s stem cells match those of the recipient’s stem cells. The higher the number of matching HLA antigens, the greater the chance that the patient’s body will accept the donor’s stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched. Thus, finding a ‘perfect match’ (also known as a 10/10 match) for a patient drastically minimizes the risk that the patient will reject the transplant or develop post-transplant complications.
We just felt that the van had the essence of a ‘Maggie.’ We didn’t necessarily choose the name, the name chose us.
How has your trip gone thus far? Can you share some of your highlights? What about your sister Alex and best friend Taylor?
The trip has gone great so far! It’s incredibly challenging and we’re presented with new obstacles every day, but we love what we do. We’ve met a lot of new people, including people that didn’t previously know anything about bone marrow but are now huge advocates for the cause. That’s always a cool thing to witness. We have officially been on the road for three weeks and we’ve registered almost 2,200 people across four states. One of the best things that has happened so far is that we’ve gotten to ring our donor bell three times. Delete Blood Cancer provided us with a small bell to ring every time a match is found at one of the Donor Jams that we’ve done. Ringing the bell is so exciting because it means that a patient has a second chance at life. We’ve also enjoyed traveling to new states (the three of us had never been to Mississippi or Alabama), and finding the hidden gems in each of the places we visit.
Often, we stay in hotels because I am still considered immunosuppressed and I need to be in clean environments. We’ve also stayed with a few friends and friends of family along the way, and we plan on doing that as much as possible for the rest of the tour. It’s nice to get a home-cooked meal!
Besides setting up Donor Jams in their own communities, people can follow us on social media and help spread the word so we can get as many potential donors on the registry as possible. Since we are fundraising to make this trip happen, people can donate online at giving.deletebloodcancer.org/sam to help us get from state to state. We also love to share stories about people’s triumphs over blood cancers and other diagnoses, and we like to provide any encouragement that we can to people currently in their battle.
SAM is all about opening people’s eyes to the reality that they can be the life-saving match for a complete stranger. We want to give people the opportunity to participate in something bigger than themselves.
Delete Blood Cancer, the U.S. contingent of DKMS and a part of the world’s largest bone marrow donor center, works with families, communities and organizations around the world to increase the number of suitable bone marrow donors and ultimately provide more patients with a second chance of life.