NEWS/blog

  • “Mr. BLUNT, from the Committee on Appropriations, submitted the following R E P O R T…” - Excerpt taken from p. 90 - 91 of the REPORT DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2020 Childhood Cancer Data Initiative.—The Committee strongly supports the budget request to focus $50,000,000 a year toward pediatric cancer research over the next 10 years. The full budget request provided in the bill will facilitate a connected data infrastructure and integrate multiple data sources to make data work better for patients,…
  • Goodbye Little Dude, with Rebecca Trotsky and Marie Smyth - click picture for podcast Goodbye Little Dude is the remarkable story about seven-year-old Jonathan, his classmates, and a pet turtle named Little Dude. While Jonathan is unable to care for his beloved turtle on his own, Little Dude thrives and grows under the tender care of Jonathan’s classmates. Together, they all learn that kindness, hope, and love are part of saying goodbye. The author, Rebecca Trotsky, gives us the background and details surrounding the creation…
  • Dr. Vibhakar at Children’s Hospital Colorado; Morin Family Braves the Holidays after Recent Loss - click pic for podcast “After symptoms that appeared suddenly and two visits to the pediatrician, Luke Morin was taken to the Emergency Department at Children’s Hospital Colorado. On April 8, 2018, Luke’s family received devastating news that there was an inoperable and very aggressive tumor in his brain called DIPG (Diffuse Intrinsic Pontine Glioma). Aggressive indeed. Two radiation attempts and seventeen days later, Luke lost his battle with DIPG. He was 5 years old..,” and…
  • As Use of Genomic Data Expands in Cancer Care, Patients Share Their Stories - As originally published by the National Cancer Institute December 3, 2019, by NCI Staff The expanding use of genomic tests has raised questions about the risks and benefits of sharing personal genomic data.Credit: National Cancer Institute Last spring, at the end of his sophomore year of college, Jace Ward developed double vision in his left eye. He thought the problem might have been related to a recent car accident. But when doctors investigated, they found a tumor…
  • No Time To Lose: Pediatric Brain Cancer and the DIPG Fast-Track with Lisa and Jace Ward - click pic for podcast "While we wait," declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, "DIPG won't wait! It won’t wait to take my mobility, my sight, my speech and my life…" With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden…
  • Oncoheroes: Advancing New Therapies for Childhood Cancer - click pic for podcast Ricardo Garcia, CEO, Cesare Spadoni, COO, and Jonathan Agin, Head of Patient Advocacy for Oncoheroes Biosciences join us to discuss this relatively new company, founded in 2017, and it's unique and thoughtful approach to childhood cancer research. The families of each of the three gentlemen have each been affected directly by childhood cancer and the lack of adequate treatments developed for children. Oncoheroes Biosciences was formed, in fact, to confront the…
  • Creating Hope: Kids V. Cancer, Game Changer for Pediatric Cancer Research - click pic for podcast Today's show features Nancy Goodman and Kids v. Cancer, the notable leader in childhood cancer advocacy and legislation in the United States. Nancy wrote the Creating Hope Act of 2012, which has created over $1B in funding for pediatric cancer research in the private sector with the Pediatric Priority Review Voucher program. We discuss also the Race for Children Act of 2017. Nancy lost her son Jacob to medulloblastoma in 2010…
  • Special Delivery… - BethAnn Telford, an endurance athlete and brain cancer survivor, advocate for brain cancer patients–especially children, made a special delivery for the DIPG Advocacy Group this past week on Capitol Hill. A letter to the leadership of the Energy and Commerce Committee in the House of Representatives, the Speaker of the House, and Committee Staff was first drafted on October 18th as a formal request for a hearing for DIPG, diffuse intrinsic pontine glioma, the DIPG…
  • Luke’s Legacy at Children’s Hospital Colorado - click pic for podcast From Denver Colorado we bring to you Jill and Cam Morin, who established in their son Luke’s honor a fund for DIPG Research at Children’s Hospital Colorado raising over $230,000 at 22% of their goal. They are gearing up for the Goddard Cares Fall Fest 5k in honor of Luke Morin; sadly, Luke passed away in 2018 just 17 days past diagnosis, of the deadly DIPG, diffuse intrinsic pontine glioma. Dr.…
  • The story behind The Fairness to Kids with Cancer Act of 2019 - Click picture for podcast On Friday, Sept. 20 this new bill, H. R. 4429, the Fairness to Kids with Cancer Act of 2019, was introduced to the House of Representatives by Brian Fitzpatrick of Pennsylvania's 1st District. Two years prior the Congressman had attended a gala hosted by Storm the Heavens Foundation in Philadelphia, PA, with Executive Director Mina Carroll. He was strongly affected by the eloquence of Mina's speech about the merciless killer DIPG,…

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