This past weekend we were in Grand Rapids, Michigan filming the story of an incredibly cute Irish neuroblastoma warrior named Lily Mae (look for that soon – and thank you for letting us share your story, Lily Mae and family!). Temperatures were in the single digits, and everyone was freezing.
As I watched Lily Mae dance around, singing her heart out no matter what she was doing, I couldn’t help but think of Ezra. He loved to dance – and I pictured the two of them hanging out by the fireplace she was playing by, or building a snowman together (the snow was so powdery it never would have worked).
Lily Mae and her family fly 3500 miles every few months to be treated by a promising drug called DFMO, which has shown incredible results in preventing neuroblastoma relapse. Neuroblastoma is hard enough to treat up front – and over 60% of kids relapse. There’s no cure for relapse. If we can prevent relapse, so many lives would be saved.
We began funding this DFMO research in 2012, when we gave $100,000 to various research focuses. Through your help in 2013, we were able to fund over $150,000 of research, giving children and families hope today – and better quality of life in treatment. DFMO is a pill which can be dissolved in lemonade, and has no side effects we’ve seen. The results so far have been astounding. This trial completes in 2014, and is being done by the NMTRC, chaired by Dr Giselle Sholler. We are also supporting NANT, led by Dr Robert Seeger, and are proud to have funded them opening their recent trial location, at Children’s Hospital Colorado.
When you give to Because of Ezra, whether by attending our events, donating online, spreading the word, or however you can help – you are making a difference. Over 90% of our donations go directly into research and awareness. We remember Ezra constantly, and we hold a banner high for each child fighting neuroblastoma today. We spend time with the families who are where we were – in hospitals, clinics, and Ronald McDonald houses across the country and world. With your help, we can change the next family’s story for the better. We can find a cure, and we are so incredibly grateful for your continued support of what we’re doing.
Thank you so much,
Kyle and Robyn Matthews, Derek Pupello, Marissa Devins, and Erica Copeland
Because of Ezra Board of Directors
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