Funding Hope for Kids Like Brynn: $250,000 to the In:Formation Project

When we wrote a second $250,000 check to continue funding the In:Formation Project, we did so with glee. Of course, we’re big on scrutiny and we’re careful with cash. But this initiative is making a powerful impact today and delivering hope and options to the warriors who need it most. 

Backing up – before we even had a name, our foundation had a mission: find THE cure for Ewing Sarcoma. Back then, we thought that it was one drug, one therapy, one magic bullet that would banish Ewings for good. While we still hope (and pray) that such a cure exists and are working hard to find it, we’ve grown to realize that the cure may look different for different warriors.

This concept snapped into focus while working with, and co-funding the In:Formation Project, an collaboration between Little Warrior Foundation, Beat Childhood Cancer Foundation, and Atrium Levine’s Children’s Hospital – with the intrepid Dr. Giselle Sholler leading the charge. With whole exome sequencing, Dr. Sholler’s team targets tumors not by the name of the tumor, but by the nature of the tumor – its unique biomarkers and expressions. Using a precision medicine approach, and when possible, this medical team can create custom treatment plans for relapsed disease cases.

A photo from last year’s grant presentation. (We mailed a regular-size check this year!) Left to Right: Dr. Giselle Sholler, Mike Burton, Piero Spada, Maggie Spada, Dr. Erin Trovillion.

We’ve been so enthused by our bi-monthly check-ins – there’s no shortage of data that gives us goosebumps, and charts that quicken our pulse. But the moment that put tears in our eyes and a lump in our throats (the good kind!) happened on Instagram.  You see, our program updates have the utmost respect for patient privacy – and HIPAA-compliant success stories are missing a little je ne sais quoi – which is probably French for “the good stuff”.

A Warrior mom reached out to us on Instagram to express her gratitude for funding the In:Formation Project. Her 11-year-old daughter, Brynn, has been fighting Ewing Sarcoma nearly nonstop for four years. After yet another relapse, the clinical trial and other options provided by their local oncologist didn’t hold much promise for Brynn. Brynn rides horses, she plays volleyball, and she is full of vitality – so none of the options felt like an option at all.

“We were in a bad place this past June with finding a tumor in her brain and then a week later finding out that the cancer spread to 3 other areas in her body. It was a very low point for all of us. Brynn was discouraged and I remember my heart dropping at the dinner table when she said “Nothing… is going to work.”

-Brynn’s Mom

After hearing about the In:Formation Project at Atrium Levine, they enrolled and had her brain tumor sequenced. The highly-advanced sequencing came back with volumes of information beyond what standard sequencing had provided. And the information was actionable – targets identified in Brynn’s tumor were “druggable”.  And the treatment prescribed to Brynn is personalized to her tumor’s genetic expression: an oral chemotherapy commonly prescribed for gliomas, a targeted medication that is often used as a maintenance medication in ovarian cancer, and curcumin (yes, curcumin!). 

Brynn’s medications are all oral - and because she is fortunate to have a collaborative oncologist, her care is being managed primarily at her local hospital, Children's Hospital of Orange County. 

For two consecutive sets of scans, Brynn’s tumors have shrunk and nearly disappeared. Something sweet Brynn didn’t feel possible a few months ago at the dinner table. Brynn’s hope is restored – her mom says she bounced to the car after receiving scan results – an unfamiliar sight for Brynn’s family. 

“I said to Brynn as we left CHOC ‘Maybe by next scan, this one spot will be completely gone.’ Brynn responded “Mom! Not MAYBE… it WILL be gone!”’

- Brynn’s Mom

This is a program that is making a difference right now for Brynn, and kids like Brynn who are low on options and low on hope. It is not simply another sequencing study that aims  to merely compile data to inform future studies. The In:Fromation Project has the potential to be actionable now if druggable over-expressed mutations are discovered.  We are tremendously grateful for our friends at Beat Childhood Cancer and Levine Children’s for developing this program. And endlessly grateful for all of our donors who made this grant possible.

If you would like to learn more about the In:Formation project, click here.

Swords up!

Brynn’s story and photos were shared with the permission of her parents. We’re so grateful to Brynn and her family for sharing their experience with us, and their story with you!