Canada’s Unique Need: Supporting Aboriginal Peoples
Fulfilling Chantelle’s Promise with partnerships to build a stronger Network
Leader. Visionary. Role model.
These are qualities Chantelle Chornoby exhibited effortlessly despite her battle with leukemia. These are also qualities the OneMatch team constantly strives toward to support patients in need of stem cell transplantation.
Chantelle was from Manitoba’s War Lake First Nation, and first beat cancer when she was only 10 years old. In 2007, she was diagnosed with a rare form of leukemia and needed a stem cell transplant to survive. Chantelle received two cord blood transplants, which allowed her to live to get to know her son. Still she succumbed to her illness on her first Mother’s Day at only 21 years old.
During her search for a matching donor, and knowing the difficulty of finding a stem cell match within her aboriginal community, she founded Chantelle’s Promise—a campaign to increase the number of potential First Nations, Inuit and Metis stem cell donors on the OneMatch Network. It is a community program with which OneMatch continues to partner by holding awareness events in aboriginal communities, with the specific focus of reaching out to young, male aboriginal donors.
Young male registrants are needed as they often provide improved outcomes for patients post-transplant. However, for Canada’s aboriginal people in need of a stem cell transplant, these potential donors generally must also be aboriginal, yet they are severely under-represented on the Network. At only 0.9 per cent of all registered donors, and with a unique genetic makeup that cannot be found elsewhere in the world, First Nations, Inuit and Metis patients do not have a wide pool from which to search when looking for a life-saving stem cell match.
"As a transplant physician, I have clearly seen first-hand how difficult it can be to find a donor, even a cord blood donor for minority or ethnic patients,” says Dr. Victor Lewis, Director of the Alberta Paediatric Blood and Marrow Transplant Program. “It is important we strongly encourage people of all ethnicities to consider becoming donors, so that in time of need, when blood or marrow transplant is the only way to save a life, OneMatch has a wider pool of donors to search within.”
For the team at OneMatch, building strong relationships with aboriginal groups across the country is imperative in fulfilling Chantelle’s promise and better supporting our aboriginal patients. In addition to Chantelle’s Promise, OneMatch has partnered with the Aboriginal Nurses Association of Canada (ANAC). A Memorandum of Understanding signed between OneMatch and the ANAC has allowed OneMatch an avenue into the community by working closely with their member nurses. The ANAC continues to provide guidance on how best to engage aboriginal communities and create awareness about the urgent need for more First Nations, Inuit and Metis registrants.
The ANAC invited OneMatch to participate in the ANAC National Forum, an annual event that brings together Canadian nurses to share knowledge and build relationships. The 2011 Forum in Winnipeg focused on aboriginal knowledge and cultural safety as the pillars supporting new healthcare partnerships that address the specific health needs of aboriginal people, including stem cell transplantation and the need for increased registration on the stem cell Network.
OneMatch Director Jennifer Philippe was honoured to share the forum stage with three generations of the Chornoby family: Chantelle’s grandmother Edna, mother Candace and son Cheveyo. The audience was touched by Edna’s reading from Chantelle’s journal. She encouraged all to carry on her granddaughter’s promise and raise awareness of the need for young aboriginal stem cell donors.
“We are overjoyed and honoured by the opportunity to fulfill Chantelle’s promise through the work being done by ANAC and their partners toward building a stronger stem cell Network for aboriginal people in Canada,” noted Jennifer Philippe. “It is an honour to be here with Chantelle’s family.”
Earlier in 2011, Chief Patrick James of Mowachaht First Nation in Gold River, BC and Chief Ben Jack Sr. of Muchalaht First Nation of Tsaxana Village, BC brought forth to the Assembly of First Nations (the governing body of First Nations communities) a resolution that endorses the work of OneMatch and ANAC. In July, the Chiefs in Assembly passed the resolution at their annual general assembly, which further put a spotlight on our program and the urgent need. Chief Patrick James, who is battling leukemia, feels this sense of urgency first hand. To learn his story, click here.
Following the passing of the resolution, the National Aboriginal Health Organization has also provided guidance to OneMatch on best practices in raising awareness of the urgent need. Such partnerships build a strong foundation to strengthen our Network. Raising awareness is the first step to engaging young First Nations, Inuit and Metis people, who hold the key to better care for their elders and a brighter future for their children.
The efforts of young aboriginal leaders such as Chantelle are helping to ensure the place of future community leaders. One such prospect is four-year-old Gabe Calicum. Gabe was born into a family of firefighters and he too hopes to grow up and help others. However, Gabe is battling leukemia and may need a stem cell transplant. Always a happy and energetic child, Gabe was diagnosed with acute lymphoblastic leukemia in 2010, a life-changing event not only for him, but also his family and community.
Although he is in remission, Gabe’s condition is complicated by a genetic deformity that can cause a relapse at any time. If he does relapse, to survive he will need a stem cell transplant from someone of aboriginal ancestry. To find out more about Gabe’s story, click here.
With the active participation of aboriginal people—particularly youth—from communities nationwide, OneMatch can help more aboriginal patients in need of a stem cell transplant. This will happen with the continued leadership and guidance of aboriginal organizations alongside support from community groups.
“Just signing up for the stem cell registry OneMatch, you have to feel a sense of pride knowing that you are helping other people,” says Gabe’s mother Jeaninne Lindsay. “Just putting yourself out there…it’s putting yourself out the there to help other families.”