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May 17th is DIPG Awareness Day in MA

May 17 is DIPG Awareness Day in many states across the country. We are so grateful to Governor Healy for proclaiming today a day of awareness in the state of Massachusetts. On May 17, 2017, our family flew to London for Devin's first treatment as part of a CED (Convection Enhanced Delivery) trial. Governor Baker was the first to declare DIPG Awareness Day that year.  Boston, Framingham, Foxboro and others lit up green to show their support for Devin and to raise awareness for DIPG. 

Since that time, May 17 has continued to be proclaimed DIPG Awareness Day. DIPG gets zero federal funding and very little attention. Yet, 300-400 children are diagnosed every year in the US. There are NO survivors and no known treatments. The DIPG community hopes that with awareness there will be more funding and will help those who have a child diagnosed to have some insight to four horrible letters they never existed.

Today, please tell someone about DIPG, call you local legislation and in memory of Devin please do an act of kindness 💚

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