Addison Pediatric Project

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Addison Pediatric Transplant Research Project

Addison’s parents want what every parent wants – to see their child grow up. But at three weeks of age, their eldest daughter was desperately ill, in near complete heart failure. A heart transplant was the only option for survival. But transplant is not a cure, at least not yet. Only about half of pediatric heart transplant patients survive 15 years past surgery.

That’s not enough.

In 2013, Elaine Yong (TRF Co-Chair) and Aaron McArthur launched the Addison Pediatric Transplant Research Project (the Addison Fund) with the express purpose of trying to ensure their daughter and every other transplant recipient has an opportunity to live a long, healthy life.

There are more than 300 children in BC who have undergone a life-saving organ transplant. That number continues to grow exponentially every year as medical advances have made it possible for some of the sickest patients to survive. Now we need more research so they can thrive.

Children are not little adults, yet much of their pre and post transplant care is based upon clinical trials and studies conducted on adult participants. Due to growth and development, and the severity of their end-stage diseases, the success and side effects of transplantation in children can vary greatly from the adult experience. That is why it is important to encourage and support transplant research that focuses on our youngest patients, and with your support, the Addison Pediatric Transplant Research Project is doing this.

In 2016, the Addison Fund of the Transplant Research Foundation of BC partnered with the Canadian Donation Transplantation Research Program (CDTRP) on a ground-breaking national Team Grant competition for pediatric transplant research. The first $25,000 donated to the Addison Fund was matched by Astellas Canada, BC Children’s Hospital Foundation and the Alberta Transplant Institute for a total grant of $100,000. Dr. Jeorg Krueger was the recipient of this award for his project, “Preparing for Combined Stem Cell and Solid Organ Transplants: Learning from Hematopoietic Mixed Chimeras.”

Since then, the Addison Fund and the CDTRP have also collaborated to support three additional pediatric-focused projects:

The creation of a new blood test to detect dangerous immune responses;
Insight into the role metabolism plays in graft rejection;
And greater understanding of health care provider and caregiver attitudes and beliefs related to varicella vaccination in immunocompromised recipients. This was once considered a contraindication.

This innovative research has great potential to improve the current state of pediatric transplantation and enhance the quality of life for young patients.

“Every day we have with our daughter is an incredible gift, but we want her to live a long and healthy life like any normal child,” says Addison’s mom Elaine Yong. “That’s why we have dedicated our efforts to raising money for research. Research is how we will get there.”