NEWS/blog

  • Pallone and Eshoo on House Passage of Ten Health Care Bills - ENERGY AND COMMERCE NEWSROOM, Chairman Frank Pallone, 116th Congress FOR IMMEDIATE RELEASE November 17, 2020 CONTACT  CJ Young (202) 225-5735 Pallone and Eshoo on House Passage of Ten Health Care Bills Washington, D.C. – Energy and Commerce Committee Chairman Frank Pallone, Jr. (D-NJ) and Health Subcommittee Chairwoman Anna G. Eshoo (D-CA) released the following joint statement after the House of Representatives passed ten health care bills today: “The House passed a broad range of health legislation today…
  • LIVING RESEARCH with Rachna Prasad and Jace Ward - A Class of 2020 graduate from UCLA in anthropology, Rachna Prasad is a working on a Masters program in clinical research at the University of Zurich, living her dream and honoring the legacy of her brother Mithil, who lost his life to brain cancer. She also manages the Mithil Prasad Foundation based in San Jose where she is from, and is developing a podcast called "Hear The Rare", devoted to exploring the science and treatment…
  • Expanded Access Program Press Release from Oncoceutics - Oncoceutics Receives Foundation Grants to Establish an Expanded Access Program for ONC201 Philadelphia, PA (November 2, 2020) – Oncoceutics, a clinical-stage drug discovery and development company, announced today that it has received grants from Michael Mosier Defeat DIPG Foundation, Dragon Master Foundation and The ChadTough Foundation to fund an Expanded Access program for ONC201 in the United States. The program will allow Oncoceutics to work with physicians practicing in the United States to provide ONC201…
  • Advocacy Group Hosts Demonstration at US Capitol for Dismissed Measure Supporting Children Facing A Cruel Death -   The DIPG Awareness Resolution brings attention to children fighting for their lives; House leadership continues to dismiss them on a technicality. Oct. 31, 2020, Santa Clarita, CA-- DIPG Advocacy Group, a coalition of pediatric brain cancer foundations and individual childhood cancer advocates, formed in late 2017 expressly for the purpose of supporting the National DIPG Awareness Resolution in the House of Representatives.  Currently designated H. Res. 114, the resolution was first introduced in 2016,…
  • Josephine and Dana - Two special moms, Patricia Palman and Lenore Scatton, share stories of their amazing daughters who both left legacies of inspiration from their fateful battles with DIPG. Josephine Palman and Dana Scatton each had huge community followings and an outpouring of love and grief with their passing. They both coincidentally enjoyed the same beloved place in nature at Jim Thorpe, PA. The two moms first crossed paths in Monterrey, MX for an experimental treatment from which…
  • Fight for Owen, Find A Cure -from South Africa - Candice Hamman and Carl Jansen VanVuuren tell the story of their son Owen who was diagnosed in June 2020 with DIPG, diffuse intrinsic pontine glioma.  There are no treatment options besides the standard radiation and palliative care, and purchase of the experimental ONC201 from Germany.  Candice and Carl share from the heart what it's like to feel helpless to save their son, yet determined to have faith that they'll get that needed break, somehow.  Childhood…
  • The Rare Cancer Awareness, Research, and Treatment Act of 2020 - The Shepherd Foundation is working with Congress to introduce a bill to position the rare cancer community for better outcomes. Founder and rare cancer patient David Hysong and CEO Catharine Young join us to discuss the recent virtual briefing with Congressman G.K.Butterfield (NC-1) and Gus Bilirakis (FL-12), Greg Simon, former Director of the Cancer Moonshot and President of the Biden Cancer Initiative and others regarding a pivotal legislative measure to be introduced before the end…
  • “Our Amazing Fighters” with LeAnna Headley - Click Pic for Podcast Meet LeAnna Headley, Childhood Cancer Talk Radio's Hero of the Week! Our Amazing Fighters started as a simple instagram page in August of 2014 by now 19-year-old LeAnna Headley from Richmond, VA to raise awareness for childhood cancer. Since then it has evolved into so much more than a social media page; Our Amazing Fighters is devoted to raising awareness, sharing stories, advocating for kids on Capitol Hill, and bringing joy…
  • Meet Anne Beatty: Survivor, Advocate, Teacher. - Click picture for podcast Meet Anne Beatty from Prattville, Alabama. She retired in December 2019 after teaching for almost 24 years. Sadly, complications from a brain tumor--physical, and social--made retirement unavoidable. Her brain tumor journey began July 4, 2018; she had open heart surgery in February 2018 for a previously undetected congenital heart condition. On July 4th, she had a stroke due to a second undiagnosed heart condition; her brain tumor was discovered at that…
  • Tribute to DIPG Children Part III - click picture for podcast Today’s radio broadcast is a special presentation and sneak peek of part II of a  Tribute Video, not yet seen, to DIPG children and their parents who have each contributed to the National DIPG Awareness Resolution in US Congress today through inspiration and advocacy for children with brain cancer.  The Resolution is the unique contribution of the DIPG community to spearheading The Childhood Cancer Awareness Movement, a long-standing fight to raise…

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