NEWS/blog

  • A Closer Look with Ellyn Miller - The Gabriella Miller Kids First Research Act, first signed into law in 2014, is perhaps one of the most important pieces of legislation and resulting research and data-resource programs for pediatric disease, to date. It begins to fill the void left by the industry of medical research and its biggest players: pharmaceutical companies, the larger cancer charities and research investors, and the NIH, when it comes to pediatric disease. All childhood cancers are considered rare …
  • Why DIPG? The One to Beat from Awareness to Research - DIPG is front and center with researchers, devastated by the picture painted by the statistics of this killer of very young children, and with advocates who have been working for years to get a greater national conversation about the chronic lack of research funding for the deadliest pediatric cancers. DIPG reveals itself to be as mysterious and ephemeral in it's signature as the variances of individual fingerprints...and represents the frontier of our understanding of cancer, …
  • What If Your Child Lives When Expected to Die? - No matter how much time one may have with a child diagnosed with terminal cancer, the stresses of life can be extreme. Natalie Avila was diagnosed with DIPG, a common yet deadly pediatric brain cancer just before her third birthday. She was given 3-6 months to live, yet she is still with us at 3 years! The joy of this life is overshadowed by the reality of DIPG. Less than one percent survive past 5 …
  • Kimberly Beauchamp: The Hopes and Perils of Making DIPG History - We get a first-hand look inside the controversial treatment program in Monterrey, Mexico, to which many DIPG families flock with the kind of determination that only an utter lack of solutions and hope can inspire. Kimberly Beauchamp, through an introduction close to the heart with her niece Kiera, discovered this oasis of fellowship and hope in 2015. To this day, the founder of "Making DIPG History", a Facebook page chronicling cases of families in the …
  • Jodi Jacobs and the “Support DIPG Awareness” Petition - What is it like when there is literally nothing they can do, when your child is ok one day, but after the next might never walk again? Jodi Jacobs tells it like it is for DIPG families, discussing what happened to her 7 year old daughter, Cheyanne.  DIPG, often labeled a very rare brain cancer, is revealed to be the 2nd most common pediatric brain tumor, and responsible for the majority of brain cancer deaths …
  • Project Haystack Part II - Molly Lindquist, CEO of Children's Cancer Therapy Development Institute in Beaverton OR, joins us to share her personal story of cancer survival and the importance of the parent-funded research at cc-TDI. We continue exploring the research Project Haystack for rhabdomyosarcoma, and hear from two more foundations helping to fund this project, first Vanessa Lendvay with Team Naomi, from Saskatoon Saskatchewan, Canada. Team Naomi began in the family living room between Vanessa, a pharmacist, and her …
  • NCI Director Ned Sharples Addresses the STAR Act, Now Fully Funded -   News From Congressman Michael McCaul, Co-Chairman and Founder of the Congressional Caucus for Childhood Cancer: Dear Friends, Last week, I hosted the 9th Annual Childhood Cancer Summit at the U.S. Capitol Visitors Center. At the summit, we celebrate our accomplishments while reinvigorating our drive to eradicate the number one killer of our children. We have come a long way and have a lot of good stories to tell since I started the Congressional Childhood Cancer Caucus …
  • With-Purpose Foundation: Kid-Power in Awareness and Fundraising - The charitable organization With Purpose, in Minneapolis MN, was founded by Erin Benson in loving memory and trust of her son Sam Lee who perished to brain cancer at a very young age, and who exhibited exceptional clarity and faith in our ability to create and enjoy our own happiness, together.  The organization is dedicated to inspiring today’s youth and engaging their creativity through education about the realities of childhood cancer and the challenges to …
  • Part I: “Project Haystack” at Children’s Cancer Therapy Development Institute - Dr. Charles Keller, Scientific Director of the Children's Cancer Therapy Development Institute, describes for us in opening the show, the ongoing work at the Institute funded by parent-led foundations in its quest to make all forms of childhood cancer survivable, specifically Project Haystack, an international collaboration in rhabdomyosarcoma research. In partnership with 10 family communities around the world, the Children's Cancer Therapy Development Institute is embarking on a drug discovery project for rhabdomyosarcoma through an …
  • Celebrating a Win for Childhood Cancer Advocacy! - St. Baldrick's Foundation, perhaps our greatest leader in advocacy today, brings us this amazing news about the STAR Act.  Because of the support of so many individual advocates across the country, and so many supporting organizations for pediatric cancer, STAR is "getting the money" from the Senate Appropriations Committee!  This is the biggest win since President Bush signed into law the Caroline Pryce Walker Conquer Childhood Cancer Act, which called for the same amount of …

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