Twenty-three year old Tori Moreno is fortunate not to remember too much of her early diagnosis with DIPG, but she remembers enough. Treated at the controversial Burzynski Clinic in Houston, TX, Tori did well on the treatments as an infant, and she is now a long-term survivor of the…
Our show features a window into the experience of a father, Mark Hyde, who literally chose to go to the ends of the earth for his daughter, honoring her life with a journey to the north pole. While she was fighting rhabdomyosarcoma, Juliet went with her dad, sister, and mom…
Most people simply don’t know that our children are not a priority, unless pediatric cancer directly impacts them or someone very close to them. May 14, Santa Clarita, CA–what began in 2014 in California as the first State Awareness Resolution for DIPG, diffuse intrinsic pontine glioma, the deadliest and the…
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…
January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee. The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain…
January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG: diffuse intrinsic pontine glioma. Not only does the bill call for an Awareness Day for these children and their families, May 17, it…
Sophie Ryan, daughter of Founder and CEO of CannaKids Tracy Ryan, inspired the birth of CannaKids. Sophie was diagnosed at 8 1/2 months old with an extremely rare brain tumor called an Optic Pathway Glioma; after using cannabis oil in combination with her chemo protocol, Sophie’s tumor shrunk by over…
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,…
“Chad and Jack’s DIPG Resolution” (unofficially titled for Chad Carr of Michigan, and Jack Demeter, of California) http://knightforms.house.gov/news/email/show.aspx?ID=QL2FAABJSRT6G “Letter to Colleagues” by Adam Brooks (introductory letter to Resolution) / Resolution Text KNIGHT INTRODUCES BIPARTISAN CHILDHOOD CANCER RESEARCH BILL CONGRESSMAN WORKING WITH AGUA DULCE RESIDENT TO INCREASE…
