DIPG Awareness Day—A National Movement

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017. (H.Res.69 asks for a date henceforth, not just …

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Theodore Lives with Juvenile Batten CNL3 Disease

Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the effects of fatal, rare, pediatric disease on the family and in a country where support is so difficult to instate. Nick comes to us from Greece, while we speak with …

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May 17 is DIPG Awareness Day—A National Movement

I discovered it was the 2nd most common pediatric brain tumor, and responsible for the majority of pediatric brain cancer deaths each year.  If brain cancer is the leading cause of death in kids with cancer, it’s hardly irrelevant, no matter how you define ‘rare’. May 14, 2017, Santa Clarita, …

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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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Christina Bouraimi’s fight for her son

Christina Bouraimi will join us on Childhood Cancer Talk Radio (CCTalkRadio) on April 6 2017. Author:  “Gregster60.com” Link to blog: http://www.gregster60.com/blog/face-to-face-a-fairy-tale FACE TO FACE:  A FAIRY TALE Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that some pictures leave you speechless. …

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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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Team Ellie!

Fifteen-year old Ellie Waters talks with us from the UK about life as a teen with cancer and the challenges of alveolar rhabdomyosarcoma. Ellie has a twin sister Olivia, brother Bailey, and 3 more step-brothers from her parents new marriages.   Mum Samantha joins us also to speak to the …

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JUST SAY IT!

“They were told it was a ‘rare’ brain tumor, and that nothing had been done for decades, in research, because the ‘numbers’ weren’t great enough for investors.  After his death, they came to learn that DIPG is one of the more common pediatric brain tumors(12% incidence), and responsible for roughly …

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Letter to the President

December 25, 2014 Dear President Obama and First Lady Michelle Obama, Please accept my deepest thanks for your replies to my letter last summer about D.I.P.G. (diffuse intrinsic pontine glioma), and the darkness of the experience that so many families have endured, and continue to face each day.  I consider …

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