Introducing the mark massey legacy foundation

“Just don’t let anything get in your way”
-Mark Massey, age 10

Today, May 8th, is 6 months to the day that Mark gained his angel wings.  I say “gained” because he earned them long before then.  
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As we sat with Mark in those final hours, we promised him that we would do our best to honor his legacy and help him to continue to leave his Mark from here.  It is with great pride that we announce the Mark Massey Legacy Foundation (www.markslegacy.org).  

Our mission is to raise awareness, help fund groundbreaking research, and support families affected by Diffuse Midline Glioma, one of the most devastating pediatric brain cancers. We are dedicated to advancing treatment options, improving patient outcomes, and offering hope to children and their loved ones in the fight against this disease. 

In a word, hope. That is what we are selling.  It is what we begged and prayed for ever since we first learned of Mark’s diagnosis.  We were given none.  We will spend the rest of our lives raising awareness and money for DMG cancer research so that no parent ever has to be told that their child has been sentenced to death from DMG. 

The standard of care for a child diagnosed with DMG in 2025 is the same as it was in 1985 and that is not acceptable.  However, substantial progress is being made.  The first time we discussed clinical trials with Mark’s pediatric neuro-oncologist he said that they weren’t at the tip of the proverbial iceberg yet, but for the first time ever, they could see it.  The only reason they can even see the iceberg is because great strides are being made by the clinical trials that are being conducted all over the world.  Almost 100% of the funding for these clinical trials for DMG are privately funded. Our focus, our goal, our mission and our purpose is to help get them on that iceberg.  

For the last several months we have been working hard to set up the foundation, so that we can make a big impact right away.  We have an amazing advisory board that is comprised of very talented people from all different fields and backgrounds with one commonality, they all loved Mark.  They stand united with us to help turn this terminal disease into a chronic one.  

We have been approved by the state of Texas as a non-profit corporation and are working to get our tax exempt status from the IRS. We have partnered with an organization out of Michigan, ChadTough.org, whose purpose and values align with ours.  The Mark Massey Legacy Foundation is a Research Partner with ChadTough and as a research partner we had the honor of co-funding a grant for a clinical trial that was awarded in April (more details to come).  We are also leaving tomorrow to fly to Michigan and attend their research conference and gala at the University of Michigan.

This is going to be the second hardest thing we have ever done.  We have no doubt that with Mark’s Army behind us, there is nothing that we can’t accomplish.  As Mark was fighting with everything he had throughout 2024 he lived by the mantra, “just don’t let anything get in your way”.  We won’t, Mark.  I promise you, we won’t.