The Messed Up Guide to Survivor Stats: Part III
"Rewriting the Stats"
While our first two blog posts may have painted a grim picture for progress in childhood cancer outcomes, we have made the decision to dig in our heels, be catalysts for change, and go rebel-ninja on this issue. This piece is about refusing to accept the statistics and our mission to rewrite them.
Two years ago, newly processing our daughter's diagnosis, we could have never imagined the impact that collective families could have on truly moving the needle for children with Ewing Sarcoma. But a crash course in childhood cancer plus hundreds of Zoom calls, wine, stacks of research papers, Lexapro, camaraderie with countless patient-families and nonprofits across the country have opened our eyes to what's possible.
We believe that we can make things better because we've seen it done before by people fighting really big battles. Two powerful examples jump out:
Neuroblastoma: Beat Childhood Cancer Foundation
Years ago, a group of parents banded together on a sidewalk outside of a pediatric hospital on the east coast: all of their children had been diagnosed with neuroblastoma, another aggressive solid tumor cancer. Seeking better options for their kids, they joined forces & formed Beat Childhood Cancer. Their determination prompted them to not only find a better therapy for neuroblastoma, but ultimately also control supply of the limited drug and start their own pharmaceutical company unfettered by corporate interests. They have successfully delivered an innovative maintenance medication to many children with high risk neuroblastoma, improving their survival rate to 97% (as compared to 57% without the drug). Why their story hasn't been turned into a blockbuster hit is beyond me. If you want edge-of-your seat reading, check out this Boston Globe Story on how it all went down. Or check out the Today Show coverage here:
[youtube https://www.youtube.com/watch?v=ZQkhPaMJA5I&w=560&h=315]
Little Warrior Foundation is currently co-funding an Ewing Sarcoma initiative with Beat Childhood Cancer and Giselle Sholler, MD, the rebel-ninja oncologist behind the Neuroblastoma breakthrough. Read more here.
Wisconsin Family takes on Angelman Syndrome
We've also had the fortunate opportunity to speak with an inspiring family here in Southeastern Wisconsin. Their daughter Grace, born in 2013, didn't seem to be hitting her developmental milestones. Hungry for answers, her parents took her to specialists where they were devastated to learn she had Angelman Syndrome (AS), a rare genetic disorder resulting in severe motor issues, little to no speech, and in most cases, seizures. While the cognition of an Angelman child is the same as any typical kiddo, their physical abilities cannot convey this, so they are trapped. The root cause of AS was pinpointed decades ago, and yet there has been little done to find a cure. The short story goes like this — their search for a cure led them to a foundation with the same mission: a group of determined parents, not accepting the status quo, who had half a decade of fight under their belt already. The excuse for the lack of progress ("it's rare") didn't deter them. They went on a campaign, raising millions of dollars and refusing to give up. The organization has funded countless studies, partnering with multiple progressive medical teams all over the country. They recently started a full-blown clinical trial, currently in progress, in which profound early results have been documented. For the first time in decades, families facing Angelman Syndrome have more than hope; they have a very promising treatment candidate. While juggling full time careers and several other children, this family has made it easy for their loving community to engage and to make a difference. They just might empower the medical community to cure Grace one day, and thousands of other kids too.
[youtube https://www.youtube.com/watch?v=utfBt_MNXJc&w=560&h=315]
Parents and families — supported by their communities— chasing down the cure. We are capable of so much if we stay laser-focused on the goal and have the courage to believe that better is possible. Our goal is for children with Ewing Sarcoma to live long healthy lives. Our dream is for treatment to be gentler & less harmful to kids.
And we're not crazy. The more we learn about Ewing sarcoma, the more we learn about its vulnerabilities and how to creatively exploit them. We're partnering with and connecting with the doctors, scientists, & researchers who have huge brains, huge hearts and huge ambition. They are outside-of-the-box thinkers that believe that better is possible, too.
As one of our favorite humans (and one of Little Warrior Foundations’ medical advisors) Dr. Pete Anderson said: “Instead of saying, ‘Why me?’ You should say, 'Why not me?’ We can do this . . . what's missing is a little bit of gumption.”
Gumption? We’ve got it in spades. We’re inspired by the change-makers before us, the warriors beside us, and the community behind us. There’s no shortage of grit, gumption, hope or hustle here… we can do this. Why not us? (All of us!)
Thank you for being part of our mission, and please, please stay close on the journey. We need you all. Fixing these outrageous statistics . . . saving our kids . . . it starts here.
Swords up!
Maggie Spada is Co-Founder of the Little Warrior Foundation, mom to an Ewings sarcoma warrior, and is pissed off.