It’s a BIG deal – our first #pediatric #transplant #research project!!

For the last few years many of you have given generously to the Addison Fund for pediatric transplant research. Today we are thrilled to announce our first research project!!! I can’t tell you how awesome this feels. I’m emotional, elated and so excited.

About a year after Addison’s heart transplant, as she recovered and we could finally start to see our way out of those dark woods, Aaron and I decided we wanted to do something that would make a difference for Addison and other kids like her. Many people have assumed the hard part was over when Addison received her gift of life, but her heart transplant really marks the beginning of another journey. Transplant is NOT a cure. The hearts don’t last forever, there are terribly toxic drugs every single day, tons of nasty (and even deadly) side effects. Ultimately, we knew the solution would be found through research. We quickly came to realize that there isn’t a lot of research directed at the pediatric population. So we decided to do something about it. In 2013 we worked with the Transplant Research Foundation of BC to start the Addison Fund. And now, our little idea has finally started bearing fruit.

Addison at 1 month – 3 days post heart transplant

This has been an incredible learning curve for us, but we have been so fortunate to have fantastic partners leading the way. Most importantly, the Canadian National Transplant Research Project has been vital at leveraging our initial $25,000 into a whopping $100,000 National Team Grant project. That means every dollar you have donated to the Addison Fund has been multiplied by four. Over the last few months, the CNTRP has been running this competition, including a rigorous peer review. Just before we left for Hong Kong, the team of expert peer reviewers made their final decision.

So now I am sure you want to know all the details about our first research project, right??!! A cross-Canada team of researchers will be looking at the possibility of combining a stem cell transplant with a solid organ transplant to try and convince the immune system into accepting the new organ as its own. This is called tolerance. That means no need for immune suppression drugs, effectively turning transplant into a cure. The study will examine a select population of kids who have had stem cell transplants and have been able to achieve this state of tolerance. Why are these kids able to get to this state of tolerance? What makes this happen for them and not other kids? How can that be duplicated? It is futuristic, cutting edge science that could be revolutionary. Pretty amazing right?? We will keep you up to date as this progresses.

But we are already thinking about our next project…so just warning you now that the fundraising won’t be stopping…until we find a way to make transplant a cure!!

Love,
Elaine, Aaron, Addison and Charlie

2 thoughts on “It’s a BIG deal – our first #pediatric #transplant #research project!!

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