Robyn Spoon, Elevate’s Founder and CEO shares her recent visit to Indiana Biosciences Research Institute (RBRI)

   I arrived in Beaverton, Oregon in August feisty and fed up with the lack of treatment options for kids with cancer and ready to learn everything I could about exactly what to do to bring new treatments forward for childhood cancer.  Months before this trip to the Children’s Cancer Therapy Development Institute (cc-tdi) for the Wilms/Rhabdo Nanocourse, our son Justin had died from rhabdomyosarcoma (RMS).

Three months into Justin’s treatment for RMS, he ran out of standard of care treatment options.

   The next 2 years and 3 months became a race to find something, anything that might slow down the beast of a cancer he had been diagnosed with.

Joel, Justin’s dad, Elevate’s CFO, and I were shocked to learn that while much has been done to advance the more common adult cancers, our kids had been pretty much left out of the drug prioritization pipeline! 

[Read more on Elevate’s Building Bridges Blog about the cc-tdi visit here.]

    You can only imagine my surprise that I had traveled all the way to Oregon only to meet a fellow Hoosier who is doing amazing work. My energy and passion to reimagine the development of therapies for childhood cancer was matched by Lou Stancato of Indiana Biosciences Research Institute (IBRI) who was also in attendance. I found out during that trip that Lou had spent his life’s work at a major pharmaceutical company in Indiana trying to bring new therapies to life for pediatric cancer, which is a challenging task on any day, but more so within an industry that struggles to find economic sense developing drugs for small populations. Lou was within weeks of retiring from his job and transitioning into a role at IBRI with the hope of being less constrained and more free to fulfill his life goal of bringing hope to this frustrating and devastating situation. With only a handful of drugs approved for childhood cancers in the same time hundreds have been brought into the clinic for adult patients.

   The first chance I had, I headed up to  IBRI in Indianapolis to learn everything I could about IBRI’s mission and Lou’s role. During my late October visit, I had the chance to spend an hour with Alan Palkowitz, PhD (President/CEO of IBRI) to learn about the history of IBRI and the vision he has for the future, including expanding the critical work of this public/private partnership to include pediatric disease, primarily children’s cancers. Lou also introduced me to Michelle Sawyer, CFO of IBRI, who is tasked with maintaining IBRI’s financial health so they can fulfill their mission! 

  Lou, the Global Leader of the Pediatric Rare Disease Platform for IBRI, is a creative and motivated leader in the therapy development pipeline. Under his leadership, I hope IBRI will be able to be a key player in moving the brilliant ideas stuck in academia over the “valley of death” in therapy development and into the hands of those who need them most, our kids! With 95% of the work in academia stuck in academia, he’s got a big job to do. He’s currently working  piloting the process to expedite the development of new treatments for childhood cancer with one specific new drug. The hope is that if this process can work, then they will have a process in place for other therapies in the future! Bring it on!

   Those who know me, know I can really geek out in a science lab. Needless to say, my inner geek was super excited to spend time in the lab at IBRI. I could feel the potential for the future all around me!

   Lou has also recently joined the faculty at IU Medical School, which will aid in creating the necessary connections to the critical work being done in academia on behalf of childhood cancer. They just need some help, help to do a job they aren’t equipped to do: bringing the therapies over the finish line into the clinical trials our kids so desperately need!

   Since our meeting, Elevate had the opportunity to sponsor a meeting with Lou for other charitable organizations focused on RMS to help us all become better equipped advocates within therapy development for childhood cancer.

  In order to make a difference, we must become informed advocates.

What’s in store for 2024?

Be on the lookout for more collaborations with Lou in this new year!