Friends, family and colleagues of a local founder are working to raise awareness of the need for stem cell donations.
Last year, Lorne Wallace, founder of Lone Wolf Technologies, was diagnosed with myelofibrosis, a rare and unusually aggressive form of leukemia. Kelli Todd-Wallace, his wife, said Wallace started to experience recurring headaches, and blood work showed a highly elevated platelet count.
He was diagnosed with essential thrombocythemia, a blood disorder that causes the body to overproduce platelets. The disorder typically progresses slowly, and Wallace was put on a low-dosage chemotherapy medication. Last summer, he began growing tired and experiencing constant fevers, Todd-Wallace said.
“Essential thrombocythemia can, in rare cases, advance to a different type of leukemia. By October, we could see that the fevers were happening once a week. His doctor ordered a bone marrow biopsy and by the middle of November they came back and told us he had progressed into myelofibrosis,” she said.
When Wallace was diagnosed with myelofibrosis, his doctors told him he was already at stage three and required a stem cell transplant. He was put into the queue for a transplant, and his doctors said he was a good candidate for a match – though the process hasn’t gone as smoothly as hoped.
Stem cell donors and recipients are matched based on genetic markers found in DNA. One major difference from blood donations is that stem cell donors and recipients do not have to share the same blood type. Canadian Blood Services manages stem cell donations in Canada and is part of the World Marrow Donor Association, with over 40 million registered donors globally.
“The doctor said finding a match wouldn’t be a problem. Well, it’s become a problem. We don’t know what genetic difference my husband has, but he’s not matching up well with anybody,” Todd-Wallace said. “There are a few potential matches, but the outcomes are not often great with those.”
Initially, Wallace’s family kept his condition quiet, but now they’re hoping that sharing his story will encourage a wider range of donors to register, Todd-Wallace said.
Gina Leyva, Community Development Manager at Canada Blood in Waterloo Region, said the organization wants more people to understand how stem cells are used and the ease of registering as a potential donor. Stem cell transplants are used to treat patients with leukemia, aplastic anemia and other blood disorders.
“Sometimes when people have leukemia, they can be treated with chemo or radiation and they go into remission or they can be cured. But for some people, there are some forms of leukemia where, no matter what type of treatment people receive, even if they go into remission, it will essentially always come back. That’s when they will need a stem cell transplant,” Leyva said.
Stem cells are immature cells in your body that have yet to become adult cells, like red and white blood cells. Leyva said with a transplant, the stem cells are essentially tricking the recipient’s body into believing the donor cells belong to it.
“When the patient receives the stem cell transplant from the healthy donor, the hope is that the body will successfully receive the transplant and start producing the blood cells of that healthy donor. The recipient would then become the blood type of that donor if it wasn't the same as what they had before, which is really interesting. Once the body recognizes and receives the donation successfully, this person can go on to live a very healthy life,” Leyva said.
Most people on the stem cell donor registry have white European ancestry, meaning that people of other ethnicities have more difficulty finding donor matches. Leyva said that Canada Blood is actively trying to connect with more communities and donors of non-European backgrounds to increase the chances of finding matches.
“Canada is a diverse country and a lot of people on the waitlist can’t find a match. The search starts in the Canadian registry first to see if there was a match and then moves to the global registry. We’ve seen a lot of people receive a stem cell transplant from a donor that was in another country,” Leyva said.
If a match is made, provincial insurance covers the recipient and donor costs. The process to join the registry is simple. Anyone can request a registry kit from Canada Blood that includes a cheek swab kit and a questionnaire. Once a donor is registered in Canada, their information is included in the global registry.
Leyva said many people have misconceptions about the donation process. There are two methods of donating stem cells. The primary method is similar to donating blood in a clinic. A donor’s blood is taken from one arm, stem cells are removed, and the remaining blood is returned to the donor through the other arm. Only in rare cases do stem cells need to be extracted from the donor’s bone marrow, typically with a needle from the hip bone.
Leyva, a registered stem cell donor, said she was inspired to join the registry while supporting a family searching for a match.
“I think that when you know someone, it really hits home. That’s what really gets people motivated to join the registry or to donate blood. You feel that connection,” Leyva said.
Nigel Vanderlinden, CEO of Collide, has created a website to connect people with information on how stem cells are collected and the importance of registering as a donor. Before his decline in health, Wallace was an investor and board member of Collide. Vanderlinden said he wants to help inspire more community members to register as donors.
“If there is one thing the Waterloo Region community has in spades, it’s 17- to 35-year-olds. I’m hoping we can encourage the youth of this community to help Lorne, and others like him, with stem cell donations,” Vanderlinden said.
In addition to the website, Todd-Wallace said their family and friends are arranging group donor registrations and other events to raise awareness of the importance of stem cell donations.
“In Canada alone, there are about 700 people waiting to find a match right now. Anybody who can register as a donor is amazing,” Todd-Wallace said.