News About The Cure
Collaborating for the Cure
January 29, 2018
Founded by The Cure Starts Now in 2011 in an effort to unify the DIPG cancer community, the DIPG Collaborative today is a unique initiative where independent foundations work together to fund the best cancer research available with the advice of The Cure Starts Now Foundation’s Medical Advisory Council. The following is an article by one of the Foundational Partners of the DIPG Collaborative in support of the cause.
Julian was not the first 4-year-old who imagined himself a brave knight or a superhero. But he sure was one of the best at it. With big dark eyes, raspy voice and huge imagination, watching our handsome guy bring his characters to life was a joy. He wore underpants over his pajamas “because that’s how Superman and Batman wore theirs.” He loved a good battle - classic good guy vs. bad guy stuff. But never in our wildest dreams could we imagine he’d have to face the most ruthless villain of all—DIPG.
On Thanksgiving weekend in 2010, seemingly overnight, Julian woke disoriented, lethargic and became ill. After a CT scan, doctors delivered the shocking news that they discovered a mass at the base of his brain. The only way we could think to explain to him what was happening was that doctors had just found something inside his head that made him a real life superhero. His smile came through and our mission began. Seven months later, Julian would pass away. We poured our grief into carrying on the fight Julian started and organized The Team Julian Foundation, now The Julian Boivin Courage for Cures Foundation. We knew how to plan events and raise money, but we also knew all that we wanted to accomplish could not be achieved on our own.
Still, in many ways, 2011 seems to mark a turning point in the battle against DIPG. That spring, The DIPG Collaborative held their first symposium just two months before we lost Julian. A year later we signed on as a partner joining about a dozen family foundations and an established, well-respected medical advisory council. While we were able to remain an independent foundation, we found comfort in the community of families and doctors who shared our mission, and we found peace of mind with the processes in place to efficiently fund the most promising research without doubling all our efforts.
In these last six years, Collaborative membership has flourished from 12 family foundations to more than 30. Researchers dedicated to cracking the code on DIPG has grown from those original six or so we found in 2010 to more than 50 today. Pooling our funds together, this collective of bereaved families has funded $12 million for 46 research grants around the country and the world, a shining example of strength in numbers. Due much in part to this funding, we’ve seen the dedication and tireless efforts of researchers make great strides in a short time.
The DIPG Collaborative is like an army of one working to defeat our common enemy. No matter the level of each organization's contribution, here we can leave egos at the door, lean on each other, encourage each other and propel our shared mission forward. We’ve look forward to meeting the other families annually - the most poignant moments coming when we get the chance to talk about our children and explain why and how they continue to inspire us. And every two years, we appreciate the opportunity to hear from the researchers about the progress of the work we’ve funded, realizing the Collaborative’s spirit of accountability, efficiency and sharing of ideas.
Moving forward, we hope to hear of continued and even stronger collaboration between research institutions across the globe. We hope to see drug companies willing to share drugs from their respective portfolios that could offer the magic combination for families in the fight. More than anything, we hope to see the extraordinary children we met at this last meeting showing up to attend our next meeting.
We understand DIPG is not an easy space to remain. For families like ours, any good news and breakthroughs can’t come big enough or soon enough. But consider how far we’ve come in these last six years. Despite the days we’ve wanted to give up, the memory of Julian’s courage and the community we’ve found in The DIPG Collaborative has helped us remain steadfast in the belief that we can play even a small role in bringing about a day when families no longer have to endure the words, “no known cause or cure.”