Original published date: 8/29/2024

While vacationing with her partner in Mexico in 2021, Johanna picked up a rather odd souvenir—a series of small, red dots scattered on her wrist. She figured it was a reaction to something she had eaten or touched.

When the dots started to spread across her body back at home, she went to the emergency room and learned the dark reality behind her rash: a rare, high-risk form of blood cancer called acute lymphoblastic leukemia (ALL).

“When I went to the emergency room, I didn’t come back out,” said Johanna. She immediately spent two months in the hospital receiving numerous blood transfusions to boost her platelet count.

She eventually returned home and received two rounds of treatments but needed a blood stem cell transplant to prevent relapse—and save her life.

Johanna had hoped her twin sister would be the optimal match she needed, but unfortunately, that wasn’t the case. Her doctors then turned to the NMDP Registry^SM, but no suitable donor was found there, either.

Historically, finding a matching, available donor has been difficult for patients like Johanna, who is Hispanic. Patients are most likely to match a donor of their own ethnic background—but only 13% of registry members identify as Hispanic.

Now, NMDP-led research is pushing the boundaries of what’s possible for all patients, regardless of ethnic ancestry.

Johanna was enrolled in the groundbreaking ACCESS clinical trial, part of the NMDP Donor for All initiative that’s researching the use of partially matched donors to unlock access to transplant for patients without a fully matched donor on the registry.

Doctors pair donors with patients using genes called human leukocyte antigens (HLA). In the past, having an 8/8 HLA match was crucial for the best outcomes. Now, thanks to the clinical trial, Johanna’s transplant team was able to find and proceed with a 7/8 donor: Catherine, a young woman the same age as Johanna.

Johanna’s transplant and recovery went smoothly, and now she’s back to work and planning her wedding.

Explore how the NMDP Donor for All initiative is expanding access to transplant and helping more patients worldwide survive and thrive. 

“Because I have a twin sister, we thought she was going to be perfect—an ideal match,” said Johanna. “But that was not the case.”

She’s not alone. Historically, having a fully HLA-matched donor was crucial for a patient’s best shot at long-term survival and health. The problem? Most patients (70%) don’t have a fully matched, available donor in their family—including patients who have a twin sibling. What’s worse: Many of these patients will never find one on the registry, either—especially those with ethnically diverse ancestries, like Johanna. Currently, Hispanic patients have less than a 50% chance of finding a matched, available donor on the NMDP Registry.

NMDP refuses to accept this reality. We launched the Donor for All initiative to unlock access to treatment through innovative research and the use of partially matched (less than 8/8) donors.

The ACCESS trial is the second of three Donor for All clinical trials sponsored by NMDP and conducted by CIBMTR^® (Center for International Blood and Marrow Transplant Research^®), a research collaboration between the Medical College of Wisconsin^® and NMDP. 

For Johanna, enrolling in the ACCESS clinical trial unlocked a new donor option: Catherine, who is a 7/8 match. While past research has shown more life-threatening complications after transplant when using a partially matched donor, the clinical trial is studying the use of a new drug that helps prevent these adverse effects after transplant.

When Catherine got the call that she was a suitable match for a young woman with leukemia, she thought about her family and put herself in the patient’s shoes: “I would want anyone to do this for me if they had the chance. It was a very easy ‘yes’ for me to donate and be like, ‘I’m gonna do what I can.’”

Catherine was 23 at the time—the same age as Johanna—which made it easier for her to relate to this unknown woman who needed her.

How did she feel after donating her healthy blood stem cells? “I didn’t even think about anything other than, ‘I’m sending all of these bags with healing energies and I’m really hoping everything works out,’” she said.

“When you hear the word cancer, you automatically think you’re going to die,” said Johanna, remembering when she received her diagnosis.

NMDP is helping make cancer and disease a thing of the past, though, thanks to Donor for All and generous community of supporters.

Science isn’t only about saving more lives, either. It’s also about giving more people like Catherine the chance to turn their inner goodness into a life-saving gift to others. And it’s reminding patients like Johanna of our shared humanity and kindness. So what does she think now that she’s met her donor?

“Wow, there’s people actually in the world who do care. It’s amazing,” she said.

With NMDP, good goes a long way. And our Donor for All initiative is bringing us even further toward the vision we fight for: a world where every patient can receive their life-saving cell therapy.

See how NMDP-led research is creating new possibilities for patients: