Batten Juvenile Disease CLN3, a Genetic Nightmare

Christina Bouraimi (mother) and Nick Maroulis (nurse) join us on CCTalkRadio from Athens, Greece to tell the story of a brave young man Theodore who lives day by day with progressed symptoms of Batten Disease, CLN3.  There are 10 identified types of Batten Disease, which is itself one of approximately 50 …

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Zamora Moon: Living with DIPG

CCTR intereviews Marisa Martinez, mom to Zamora Moon, a little 9-year old girl battling DIPG, diffuse intrinsic pontine glioma, arguably one of the deadliest cancers which is almost exclusively pediatric.  Her pioneering journey into the unknown includes treatments in Germany and the UK.  Lisa Spedale, who’s daughter Kira was the …

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Remembering Super-Dylan: Remember Just to Love.

Eric David is writing a memoir about his son, Dylan David, aka “Super Dylan.”  For more information about the memoir, and why it is so important, please visit: https://www.gofundme.com/RememberJustToLove  Eric’s Facebook page: www.facebook.com/10155082671476754 Please visit his website http://dylan.ericdavid.info for the full story of Dylan’s history; here is an excerpt: “In late …

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Letter to President Obama, 9/10/2016

There is a specialized killer loose taking the lives of 350 children a year in our country with certain regularity; I believe we’d be using whatever resources necessary to track him down if he were a person. Dear President Obama,                     …

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Letter to President Obama

To President Barack Obama:                                                                                       Thursday May 5, 2016 I had the pleasure of meeting with Fae Jencks in the Office of Science and Technology this last Tuesday regarding an Awareness Resolution currently in the House of Representatives, HRes586, designating the 4th week of May to be National DIPG Awareness Week.  …

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DIPG Awareness Week in California, May 25-31

Wednesday, May 20, Santa Clarita, CA–DIPG, diffuse intrinsic pontine glioma, is a pediatric brain tumor that is invariably terminal with no progress made to that effect in over 35 years of clinical record.  DIPG is responsible for roughly 80% of pediatric brain tumor deaths annually[1], the leading cause of cancer-related …

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