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Mile 18

"...We are at Mile 18 of the marathon." (Dr. Oren Becher, 2019 DIPG Symposium)

If you have run a marathon (even if you haven't, humor me and imagine), remember how your body and mind felt at mile 18. (Dramatic Pause) I am sure everyone's experience is a bit different, but some thoughts and feelings might be extreme relief that you have made it well past the halfway point; maybe you felt overwhelmed because you still had a long way to go; maybe you had total mental and bodily exhaustion; or you were sooo past the point of exhaustion that all you could do is run and keep your eyes on the prize - THE FINISH LINE.

This past month Ben and I had the opportunity to head to the beautiful land "Down Under" for our big DIPG Symposium that took place in Sydney on August 2-3. (A quick recap on the Symposium: It happens every 2 years and its the pinnacle of the DIPG Collaborative (a collection of foundations with one mission, to find a cure for DIPG) and is the high point of our grant cycle but it's also a time for the researchers worldwide who are studying this disease to share their ground-breaking research. Let me reassure you, it is in fact ground-breaking!) As a participant in the conference you share the audience with both researchers and foundation members and have an opportunity to listen to each of the doctors/scientists and their progress from the grant they received 2 years back. It truly is a unique experience. I remember thinking at the last symposium that took place in Cincinnati May of 2017, a cure is still a long way off, too long, like 10 years at least. When I leave each symposium, I want to know what the research translates into for the families struggling out there NOW - or the ones who will struggle in next year. This time was different. I felt like it is a real turning point in the race. The quote above about mile 18, was from a doctor who started his talk with this. It struck me, he actually said where he thinks we are in the race, way past the middle and on the verge of running the last several miles of the race. Decades and decades have passed for children with DIPG having only one treatment option. Decades - like since Neil Armstrong's daughter died from his same disease - so over 50 years. Then something changed in 2011, some great minds got together and decided to work together and do something different. Thus, the Collaborative and Symposium began. It was the catalyst that finally made doctors (like Dr. Monje from Stanford) realize that it is vital to figure out how this tumor works, instead of just trying what works with other tumors. That is exactly what has happened since then and this is why he thinks we've made the progress we've made: they (researchers) now grow the actual tumor in labs, they now know how to reach the brain stem without killing the child, they now know ways to reach through the blood brain barrier, they know that genomics are just as important when treating DIPG as in many other cancers, they know it will be a multi-medicine/mulit-therapy treatment, and they do know several drugs that do help at least for some kids for a short time. Info is shared freely among the doctors, there are efforts to gather data from children alive and via autopsy (including Wayland) in a central data base, and drug trials are being offered in more than one location so families don't have to travel the globe for treatment. BAM! So much has changed since Wayland has passed and now the race is finally at a turning point!

DIPG foundations and doctors are united in the race, so when we feel overwhelmed and exhausted, someone else offers encouragement to keep on going. Honestly, that is a huge part of why Ben and I felt it necessary to go all the way to Australia, not only to maximize the dollars from our fundraising efforts, but we feel energized to finish the race every time we attend the conferences and that truly is one of the miracles of the DIPG Collaborative and the Symposium. But we also need your support. Let's get energized and get this race finished. Maybe with some hard work and prayers, in 2021 we'll hear that we're at mile 26!

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My original endeavor was to share our story of losing a child to a brain tumor and our journey to help find a cure for pediatric brain cancer. That is not changing, but our journey is. Let me take you along. 

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