NEWS/blog

  • 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,…
  • Childhood Cancer Caucus Summit 10th Anniversary Special Edition - click pic for podcast download Thursday, Sept. 26 show features interviews with key individuals with important information about CureFest, the rise of childhood cancer awareness, and issues facing childhood cancer families today. The episode marks the passing of the 10th Anniversary of the Childhood Cancer Caucus Summit (9/19/2019), for which Congresswoman and Co-Chairman Jackie Speier (CA-14) shares her experience; Donna Speckard, producer of The Promise docuseries witnessed the beginnings of CureFest, and comments on progress…
  • “Fry and Die, AML!”-with Julie Guillot and Michael Copley - The title of our podcast is a loving tribute to our guest's son Zach's spirited and inspirational fight against Acute Myeloid Leukemia. From TARGET Pediatric AML to the new Children's Initiative with Leukemia Lymphoma Society, this literal AML dynamic duo, Julie Guillot, patient advocate, and Michael Copley, national chairman of the Harry T. Mangurian, Jr. Foundation -- Beat AML campaign, have created an unprecedented partnership to cure pediatric AML. They come by it honestly; each…
  • The House that Hope Built in Zurich, with Philip Manduca - click pic for podcast download or stream, depending on your device Upon the diagnosis of his daughter in 2015 with the deadliest pediatric brain cancer DIPG, Philip Manduca, a financier residing in London, UK,  was supplied with the standard of care "death sentence" by the medics. He realized that he was on his own in the mission to prolong and even save his daughter’s life. He pioneered experimental treatment schedules, and he argued that dosages…

Comments are closed.