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Young Woman Battling Blood Cancer Inspires Global Search for Mixed-Race Marrow Donor

By Tamara Treichel

Lara-2

Only several months ago, Lara Casalotti was a vivacious 24-year-old Yoga aficionado dedicated to social causes such as at-risk youth and marginalized groups. That changed dramatically when she was diagnosed with Acute Myeloid Leukemia in December 2015. Now, the young half-Chinese-Thai, half-Italian woman with warm brown eyes and a winning smile is using all her energy in a grueling battle to stay alive.

Lara fell ill in Thailand while conducting research with an Oxford professor. Her symptoms were pain, which she mistook for a pulled muscle, and breathlessness. She never thought she would be diagnosed with leukemia.

Lara 3 in hospital

Lara, who was born in the United States and is currently living in London where she is undergoing chemotherapy, desperately needs a committed bone marrow donor who is a genetic match by April. April has been set as a target date, not an absolute date. Doctors say a bone marrow transplant is her only chance at long-term survival.

Due to her mixed background, finding this donor is very challenging. “But, her own diverse heritage is now threatening her life,” said Supanya, Lara’s mother.

Unfortunately, Lara’s brother Sebi, her only sibling, is not a match. (A sibling stands a thirty-percent chance of being a matching donor.) A suitable donor for Lara will be likely someone who is of mixed Asian and Caucasian descent.

Luckily for Lara, her family and friends have launched the #Match4Lara campaign. The campaign serves a dual purpose: finding a bone marrow donor for Lara while raising awareness of the shortage of mixed-race donors on registries.

“Doctors, nurses and scientists are trying to do their best to cure this disease,” said Stefano, Lara’s father. “But, we know for the next 10 to 20 years, we will still need stems cells or transplants as part of the treatment. This is an appeal to everyone to join the registry if you are able.”

The #Match4Lara campaign has become global, spanning three continents: There is one in Europe, one in Thailand and one in the United States. The U.S. campaign was launched on January 12. Shortly afterwards, Lara’s cousin Charlotte approached Asian Fortune in the hopes of spreading the #Match4Lara campaign in the United States through an article.

Media such as BBC have reported on Lara’s cause, and celebrities such as J.K. Rowling and Stephen Fry have also been strong supporters.

“Please RT! A Eurasian donor is desperately needed to save this young woman’s life. Do your thing, Twitter! Match4lara.com,” J.K. Rowling, author of the immensely popular Harry Potter series, tweeted.

British actor and author Stephen Fry also supported Lara’s cause by tweeting: “Mixed race? You can do something with your unique identity – save a life.”

Thanks to the #Match4Lara campaign, thousands have signed up to become bone marrow donors.

Lara’s case illustrates the shortage of multiracial bone marrow donors and the urgency of making registries more diverse.

“There is a shortage of committed non-Caucasians on the Be The Match national registry,” said Carol Gillespie, executive director of the Asian American Donor Program (AADP ). “We need everyone of mixed race ancestry to step forward and join the Registry,” she said, referring to Be The Match, a large U.S.-based registry that accepts bone marrow and cord blood donations to help those with blood cancers.

“People that self-identify as mixed race make up 4% of the Be The Match Registry, approximately 493,000, as of fiscal year end 2014. The current registry numbers have not yet been published,” Gillespie told Asian Fortune.

“Multi-racial patients face the worst odds. Those diagnosed with a blood disease need a marrow/stem cell transplant as soon as possible. Building the Registry with committed donors is what patients need. You could potentially match anyone in the world, this is truly a global effort,” she said.

The AADP is a nonprofit 501 (c) 3 organization headquartered in Alameda, California and is an official recruitment center of Be The Match.

The nonprofit’s mission is to inform the public about the lack of ethnic marrow donors and the importance of joining the Be The Match national registry.

Gillespie told Asian Fortune how they are raising awareness that more mixed-race donors are needed. “The best and most efficient way to bring awareness to the mixed-race community is through story-telling; unfortunately that means patients telling their story and encouraging the community which they represent to learn more and register as a committed marrow or blood stem cell donor.  […] [W]e need to spread the word using social media, mainstream media and on all college campuses. Basically, we need to reach the entire world. ”

“The world is changing, the mixed-race community is the fastest growing community and we need a more diverse registry if we are going to meet the needs of patients in need of a transplant. The only way we can do that is through more education and awareness about the need for more diverse donors and the importance of being a committed donor,” she said.

“You could be the cure. Those whose marrow/stem cells are not a match for a patient in need now may be a match for someone else down the road, anywhere in the world. I encourage multi-ethnic individuals, who are 18 to 44 years old, to commit to registering. Registering is simple – just a swab of the inside of your cheek,” Gillespie said.

Meanwhile, Lara is still waiting for the donor who will save her life. Nevertheless, she is doing her best to stay in good spirits.

“My family and friends have been amazingly supportive and have been by my side from the beginning. They’ve helped make this whole process a lot easier. Also receiving messages of support and well-wishes from people all over the world has been really touching and has kept me positive,” she told Asian Fortune.

“Being diagnosed with Leukemia has made me understand that you can’t have control over everything in your life, and some things you have to just accept. Life is made up of experiences, and this diagnosis is just one of those experiences,” she said.

Lara told Asian Fortune she is profoundly touched by the outcome of the #Match4Lara campaign.

“The response has been phenomenal. It’s so inspiring seeing people from different countries, ethnicities, and backgrounds united behind the campaign. I am so grateful to my family and friends who have made the campaign possible and I am so encouraged to see how many people have gone to sign up on the donor registries in response to Match4Lara.”

 

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