“Do you scratch your head wondering why it’s so hard to develop new therapies or change the standard of care for kids with cancer? 

    I sure hope you are curious about this—our curiosity is one of our greatest tools we can use when solving complex problems! It causes us to make fewer assumptions and open up the door to possible micro-solutions we’d never considered before.”

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    Robyn Spoon, Elevate’s Founder shares a behind the scenes look at Elevate’s IBRI Advocacy Day, why and how it came about, plus we can’t wait to share the incredible childhood cancer stakeholders that joined us!

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   “I am often asked to explain why our children are still living in an “era of chemotherapy” when the more common adult cancers are being fought with precision medicine and advanced forms of immunotherapy. Why do adults with cancer get to monitor their cancers with biomarker tests while our children are subjected to days of scans and radiation to monitor their disease? 

The answer is complicated. 

   Elevate seeks to empower patients, advocates, caregivers with the highest quality of information so that as a community we can be more savvy problem-solvers! This means that we must empathize with each stakeholder (academia/universities, oncologists, biotech, industry partners, regulatory, advocates) in the therapy development pipeline to better understand their strengths and their limitations in order to provide the support and advocacy needed to make incremental changes to open the door to new therapies and changes in the standard of care…to bring our children into an era of precision medicine and immunotherapy alongside their adult cancer peers. Empathy provides space to better define the problems and ultimately prototype solutions. 

   We know that most of the novel efforts being developed in academia get stuck there. We’ve been working with scientists and oncologists all over the world and they are frustrated with this! Elevate has been deeply involved in forming coalitions and workgroups to tackle the problems, but we also knew we had to provide more opportunities to help other advocates learn more about this problem, so that we can better define the problems available to tackle! 

So, the

Elevate Advocates Day at the Indiana Biosciences Research Institute

was conceived!

   After meeting Lou Stancato, a brilliant and motivated childhood cancer pharmacologist, at an event in Portland, Oregon, I was stunned to learn he lived 45 minutes away from my hometown. He was charged with developing a public/private partnership program within the Indiana Biosciences Research Institute to develop new therapies for childhood cancer. I couldn’t believe this new model was literally in my home state. I have met with scientists from all over the world who are desperate for a new model to bring therapies forward to our kids, who need them the most. I immediately wanted other advocates to learn from Lou, so we set a date for the first ever Elevate Advocates Day at the Indiana Biosciences Research Institute

    We spent months planning the content and possible speakers and personally invited advocates across Indiana and beyond, including a virtual option for our more distant advocates. As advocates gathered from around the state and beyond, it felt more like a reunion than a first time meeting for most. The morning coffee hour was filled with hugs, tears and joy!

    In addition to advocates and scientists, we were joined by Jim Foote, of First Ascent BioTech. The different stakeholders took time to share and learn from each other. The day included short lessons and updates from various stakeholders: advocates, scientists, pharmacologists, oncologists, and even a biotech leader. Advocates took the mic to share different ways they are working together to bring about awareness and the impact they’ve made to get children added to the Indiana Cancer Plan for the first time ever, and recent updates from the Rare Disease Advisory Council. Elevate also invited the Indy Mirror to come and cover this important day to share with more of the community.

    The advocates toured the impressive IBRI facility and shared their stories with the scientists charged with the work, which is incredibly impactful. During different moments of the day, scientists/oncologists/industry partners shared how meaningful and motivational it is to stay connected with the advocacy community.

We often hear them say, “That would be a great role for advocates.”

   So, as Lou said after the event, “What’s next?”

   First, we think the event fulfilled its intended purpose of educating and empowering advocates in the development of new therapies for kids with cancer.

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Beyond that, here are some other important outcomes:

1.) The advocates were left with a charge to collaborate on a few efforts across the state this year!

2.) Elevate workgroup members want more! They want more learning about the therapy development pipeline in order to be more savvy advocates, so we are working on a plan to get that done!

Learn more about #ElevateRhabdo HERE and #ElevateWilms HERE.

3.) Along with our Elevate workgroup members, we believe this event could be a prototype for events in other places across the country!