Childhood Cancer Talk Radio Podcasts

Today's show is a recap of recent advances in childhood cancer advocacy and reiterates the basic facts about childhood cancer for which we strive to provide a worldwide platform for awareness at Childhood Cancer Talk Radio.

As co-founder of DIPG Advocacy Group, host Janet Demeter is in a unique position to share the latests developments for childhood brain cancer advocacy and a new introduction of the National DIPG Awareness Resolution. At half-time we are privileged to bring you some excerpts from a recent webinar with the Children's Cancer Cause with Sue Emmer, Policy Counsel, detailing the three most important points of focus for advocacy for children with cancer as we move forward into 2021: community collaboration, pediatric drug discovery and development, and support for childhood cancer survivors.

Children's Cancer Cause is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families.

In this edition of Childhood Cancer Talk Radio, members of the DIPG Advocacy Group Gerry Tye (Syndey, AUS), Katherine Bader (Rhineland, Missouri) and Marcelo Ortigao (Fort Collins, CO) share their personal experiences with DIPG, one of the more common types of childhood brain cancer, and the deadliest with very few survivors. DIPG Advocacy Group is a coalition of childhood brain cancer organizations and individual childhood cancer advocates which initially formed to support the DIPG Awareness Resolution in US Congress, and continues as an international group as the impact of awareness affects research, education, and accessibility to clinical trials.

Keith Desserich, co-founder of The Cure Starts Now worldwide charity for pediatric brain tumor research, joins us today at this hopeful new year's beginning. When Keith and his wife Brooke found out that their beautiful daughter Elena had DIPG, a devastating pediatric brain tumor in 2006, there were no dedicated clinical trials, no networks, no information and no parent groups. Elena’s story was the first public case of DIPG, ultimately becoming the subject of a bestselling book titled “Notes Left Behind” that was published in 22 languages and forming the basis for what is now around $16 million in funded DIPG research with millions more now spent annually. After Elena’s death in 2007, they created The Cure Starts Now Foundation, the largest DIPG/DMG research charity with 40 locations in the US, Australia and Canada. They also founded the DIPG/DMG Collaborative coordinating the efforts of another 25 independent DIPG centric charities, and so many more developments approaching the threshold of a cure.

We learn about new innovations in research and networks for family support, including the new DIPG Warriors Facebook group, all of which can be found at www.thecurestartsnow.org.

For the love of Aspen, diagnosed 6/20/2020 at the age of 4 with DIPG, a terrifying childhood brain cancer, father Ryan, mother Allison, and Aunt Tristin join us to share what this journey has been like as we are precariously close to the discovery of a cure. Along with grandfather William Agnew, this family is dedicated to raising greater public awareness for DIPG to attract a cure

more quickly for all.

The Agnew family is exceptional in their immediate action and involvement with the DIPG Advocacy Group, a coalition of childhood cancer advocates and pediatric brain tumor foundations founded for the purpose of supporting the DIPG Awareness Resolution in US Congress.  As the experience of DIPG does not lend itself to hopeful advocacy, generally speaking, this family's bold stance of publicly sharing their experience with Aspen as their story unfolds has helped raise awareness for DIPG and also sped access to the latest hopeful treatments.  Aspen's father Ryan began the 9:12 DIPG Challenge group on Facebook which currently has almost 1000 followers and supporters after a very short period of time.

Childhood Cancer Talk Radio was fortunate to interview the man behind the camera of The Truth 365 for our show Thursday, Jan. 7 2021.  A childhood cancer advocate since 2007, Mike Gillette is an Emmy Award-winning filmmaker and photographer who also serves as Public Relations Director for the Arms Wide Open Childhood Cancer Foundation.  He lives in northern Virginia with his family, and uses his talents to help give a voice to children with cancer. 

We get a privileged glimpse into the background of the caring person who co-founded, along with AWOCCF founder Dena Sherwood, The Truth 365 campaign.  Mike is one of those rare and beloved individuals who have not themselves had a child afflicted with cancer in his own family, but was touched by the experience of witnessing a child's fight with cancer and realized, "this could be my child," that these are all of our children. He became an influential and effective childhood cancer advocate and was integral to the creation of CureFest, an annual event for the childhood cancer community on the National Mall in Washington, DC.

In our conversation we discuss advocating for children during the pandemic and how the pandemic has adversely affected non-profits in their outreach, the lesser-known realities of childhood cancer, advocacy, and a little history of CureFest and tentative plans for CureFest '21 and most definitely CureFest 2022.

"Filling the gaps" is the mandate in the childhood cancer world rather than a nice idea. Kristena Kitchen with Bryanna's Love Foundation in Burlington, MD, works tirelessly with a small army of volunteers to make her programs work, inspired by her daughter Bryanna who lost her life to the deadly "ETP-ALL", or Early T-Cell Precursor ALL.

"Give Kids a Snuggle" continues giving stuffed animals to children at Children's National Hospital. "Sibling Love" serves the most overlooked members of the childhood cancer community, siblings of the affected. Now, Kristena shares with us the challenges and triumphs in beginning her new program "Home-to-Care", in the attempt to solve logistical problems which families invariably face: living without income or savings; travel issues, childcare during treatments and a host of other unforeseen difficulties. Working locally, Kristena's vision for the project is national. Visit www.bryannaslove.com to donate and learn more about how you can help.

Howard Salmon comes to us from the Ronald McDonald House near the UC Davis Children's Hospital in Sacramento, CA, where his son Liam is receiving some emergency care after having had some difficulty breathing. Liam was diagnosed in January 2020 with DIPG, diffuse intrinsic pontine glioma, a deadly and prevalent form of childhood brain cancer.

Howard generously shares precious time with us, as Liam may not have much longer to live. He describes the reality he faces, and discusses in detail the importance of greater awareness for DIPG, pediatric brain cancer, and the general lack of funding for childhood cancer research. He is a proponent of the National DIPG Awareness Resolution, urging Congress to pass it before the end of 2020. "We can't get help fast enough to save our kids."

Anthony’s Avengers Defeat DIPG Foundation is a chapter of Michael Mosier Defeat DIPG Foundation, the parent foundation based in Maryland that honors the legacy of 6-year old Michael Mosier, who also courageously fought DIPG, succumbing in 2015.

Katie Gaskin established Anthony’s Avengers Defeat DIPG Foundation in honor of her 7-year-old son, Anthony Pappalas, who bravely battled against DIPG for 19 months before passing away on March 9, 2017. Like many families who learn of their child’s diagnosis, it was the first time the Gaskin family had heard of DIPG.

We discuss in depth the leadership that the Defeat DIPG network has lent to the national movement for DIPG Awareness Day, and then the precious, heart-wringing tragedy that nearly all DIPG parents experience as they witness their children struggle to the end, the motivation for this awareness movement.

A Class of 2020 graduate from UCLA in anthropology, Rachna Prasad is 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 of childhood brain tumors.

Present and partner to the beginning of this podcast production was Jace Ward who joins us for the second half of the show; Jace is involved in an experimental protocol for DIPG that is projected to accept only 6 patients in its first year of operation. On this day, Oncoceutics Inc. released an official statement regarding an exciting new trial for ONC201, a drug which helped Jace live with DIPG long enough to get on the experimental Carr T-Cell treatment he has just received, with which he is faring well. Jace and his family, notably his mother Lisa Ward, have accelerated the actions of advocacy in the space of pediatric neuro-oncology with their commitment to bring people and resources together to find a cure.

Two special moms, Patricia Palman and Lenore Scatton, share about their amazing daughters who left a legacy 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 they, like many others, found an extension of their life for their daughters. Dana leaves behind the beautiful baby Aries, as she was diagnosed while pregnant; tragically, her sister Lydia followed her to the beyond shortly after Dana's death. Today, the two mothers share a unique and precious friendship with their angels close by.