Today is the perfect day to thank everyone who has played a part in what we have accomplished so far. Our foundation has been able to make an impact because of a lot of people coming together, raising a lot of funds for research, and demanding change.
This is Emerson. Emerson the Brave. She was diagnosed with DMG over 4 years ago. I guarantee she never wanted to be the face of hope, but she is. This young lady has been visiting her doctor every 3 weeks for the past 4 years. And guess what? He’s not even local. He’s a couple of hours away. Can you imagine adding that into an already busy life with kids? I had the pleasure of meeting Emerson in person about a year ago. Her smile lit up a very dreary morning. Her family’s message reminded me how important our work truly is.
Emerson is on ONC201. Her family credits this drug for her beating the odds and continuing with a (mostly) normal life. And her family credits our foundation for making OCN201 an option for Emerson. I know we have only played a small part, but I also know we have now played a lot of small parts, and they have added up to real change. The survival time for a DIPG patient has actually changed for the first time in decades. It moved from 9 months to 11 months. Still totally unacceptable, but movement is proof that we are making a difference. Months will become years, and years will become a cure.
Thank you to our founders, Chad’s and Michael’s families, for channeling their loss and pain into an effort to change the outcome for families diagnosed with DIPG in the future.
Thank you to our Family Partners for jumping on board and helping to advance our mission, and for sharing your beautiful children with us as inspiration to fight harder for that cure.
Thank you to the researchers who choose to attack one of the most complex challenges out there because they know kids deserve cures!
Thank you to our nurses who have successfully launched our My DIPG Navigator program, positioned to help families in the fight find the best treatments for their children, all free of charge.
Thank you to our Research Partners and Navigator Partners for joining our efforts. And thank you to all the other foundations out there who have given us the opportunity to collaborate together!
Thank you to our Board, Leadership Council, and volunteers who freely give of themselves to help us do more and do it better.
Thank you to our sponsors and donors, especially our Cornerstone Club members. Whatever you’ve been able to give has gotten us one step closer to a cure.
And thanks to all who have hosted fundraisers benefitting the foundation. Your efforts truly do make a difference.
Lastly, I need to thank our staff. We have the best team on the planet. They give so much of themselves for all the right reasons – the kids. I know our hearts are with all the families missing someone special from their table today, especially our ChadTough families.
As you are enjoying your day with your family, please remember that you are appreciated for what you are doing to #DefeatDIPG! Change is happening because of you. And kids like Emerson are benefitting from it!
Happy Thanksgiving from all of us at ChadTough Defeat DIPG!