September Events Focus on Childhood Cancer

This autumn, two events put childhood cancer in the spotlight as the #1 cause of death by disease in children: the first BrainStorm Summit at CureFest and the White House Forum on Childhood Cancer. At both events, families who have lost children to brain cancer shared their experiences with top researchers and policymakers.

Gift from a Child’s Ginny McLean was on the steering committee for the inaugural BrainStorm Summit, a day-long conference held before the annual CureFest for Childhood Cancer in DC. Gift from a Child hosted a panel discussion on post-mortem tissue donation and data-driven discoveries in pediatric brain tumors featuring Dr. Adam Resnick, Founder of the Children’s Brain Tumor Network. Dr. Jeff Greenfield (Weill Cornell) and Dr. Brian Rood (Children’s National Hospital), both from our Gift From A Child Centers of Excellence, discussed how tissue donation improves treatments for their patients.

Patti Gustafson of Swifty Foundation and Kristine Wetzel of the McKenna Claire Foundation brought a parent’s viewpoint to a discussion on how donating can be a positive first step in the family’s grieving process and the valuable data obtained from patient-donated tissue. Since the event, Patti has received requests from hospitals to share Gift from a Child’s mission and the work of the tissue navigators who make donation possible. “That’s what we need,” Patti says. “To find the pockets where donations aren’t offered and educate them on GFAC.”

Another highlight of the weekend was a series of new events at CureFest for childhood cancer survivors and siblings who lost a sister or brother to cancer. Bridget, Mikey’s twin, was an ambassador and host during these meetings. It meant so much to Bridget to talk about Michael with other children suffering a similar loss. These events, says Patti, “are all ways we try to find some meaning in our loss.”

Also, in September we saw the return of The White House Forum on Childhood Cancer, the first since 2016, which represented the relaunch of the Cancer Moonshot. The Forum brought together leaders in the childhood cancer community – including NCI Director Dr. Monica Bertagnolli, leading cancer researchers, clinicians, patients, survivors, and advocates – to focus on ways to share data, accelerate trials, support families, and promote solutions to end the devastating impact of childhood cancer.

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