November 13, 2016 Re: SOS; American Children Dying Daily #CureDIPG #JacksAngels DIPG Report Letter to President Obama 9/6/2016 H.Res.586 To the Honorable President-Elect Trump and his Staff: I write to you with great hope in my heart that indeed the change you represent…
CCTR interviews Ann Graham, founder and CEO of MIB Agents, an organization devoted to making the lives of children and young people with osteosarcoma better. A groundbreaking conference, FACTOR, is scheduled for 2/24-25 of 2017 including experts, clinicians, patients, and families of children who have perished or who are currently…
CCTR interviews Emily Belcher, advocate, event planner, mother of a childhood cancer survivor, and CureFest volunteer, who tells us about the early days of CureFest, the events goals and influence, and the direction of the Childhood Cancer Awareness Movement. Emily discloses her daughter’s frightening experience with PNET, a pediatric brain…
This link will take you to the Scientific American article online about DIPG. Though technically a rare disease, DIPG is arguably significant. By Esther Landhuis on October 28, 2016, Scientific American online Scientists Tackle Lethal Childhood Brain Cancer In precision medicine era legacy gifts of patient brain tissue reveal disease mechanisms…
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…
CCTR interviews Caitlin Lee (12) and her mom, Kelly about Caitlin’s recent diagnosis with BPDCN and course of treatment. Blastic plasmacytoid dentritic cell neoplasm is a rare, especially among children, acute leukemia subtype with no therapeutic protocol because it is so rare and newly categorized. Stories of hope and unparalleled…
