In December, Swifty convened a Family Forum in Philadelphia of families who had donated their child’s post mortem brain tissue. Not exactly your typical holiday gathering, but so much good has come out of our time together. In the coming months you will be hearing a lot about the initiative that was launched at the Family Forum: Gift from a Child.
Gift from a Child’s mission is to increase post mortem pediatric brain tissue donations through advocacy as well as the education of families enduring the worst … the loss of a child.
The leadership team for Gift from a Child is made up of families who attended the Family Forum. We are so grateful to: Unravel Pediatric Cancer, Children’s Brain Tumor Foundation, Live Like John, Grace’s Gold Ribbon Gang, KidsVCancer and Andrew Haggenmiller’s Family for helping us develop this game-changing initiative.
A special thanks to the McKenna Claire Foundation for their grant helping us fund the Tissue Navigator at Stanford. We are so grateful for your support.
The leadership team has been busy developing an important part of Gift from a Child: our Family Companion program. This program will match a family who is considering donating their child’s autopsy tissue with a family who has walked this sad journey before them. This 1-on-1 relationship will give families an opportunity to ask personal questions as they consider the decision to donate as well as offer support and empathy at a terribly difficult time in a family’s life.
Since Michael’s donation I have dreamt of helping other families make this tremendous gift to the research community. Knowing Michael’s tissue donation is helping change the current treatment of medulloblastoma patients gives so much hope and comfort to our family. I want other families who suffer this devastating loss to have this consolation as they navigate life without their child.
And the power behind it all: Gift from a child….for a child.
