Childhood Cancer Talk Radio Podcasts

CCTR interviews Elizabeth Psar, an attorney with a focus in Juvenile law now on a mission against DIPG with the Julia Barbara Foundation. The discussion includes the realities of DIPG and her 2 1/2 year old daughter Julia, and the unavoidable effects of the experience of losing a child to a previously unknown killer. Julia's legacy is funding for DIPG research and a nationwide effort in support of an Awareness Day for DIPG, both at the State level with the "across the map project", and as a proponent of the National Resolution HRes69.

Childhood Cancer Talk Radio interviews Patrick Mahoney from the Office of Advocacy Relations (OAR) at NCI. The March 16 discussion included a brief history of the National Cancer Institute, it's role as a scientific research institution as well as resource of support and direction for millions afflicted with cancer. "We want people to contact us...let us know their greatest concerns to better represent public interests in cancer research..," he sustained, sharing examples of public input affecting research and eventual solutions where there had previously been none. Host Janet Demeter ensured the conversation included the "dreaded" 4% issue--gladly addressed by Mahoney, bringing to the forefront the current challenges in medical research and also the recent efforts of advocates which have had a definite impact on the course of research and the importance of pediatric research at NCI, keeping the discussion to a collaborative and jovial spirit, and an optimistic outlook for pediatric research at NCI. The National Cancer Institute remains the greatest contributor to the field.

Amperell Williams joins us on CCTR to talk candidly about her experience with her son, Caleb, who was diagnosed at the age of 5 with T-cell Lymphoblastomic Lymphoma. The Williams family was challenged with financial difficulty, the stress of toxic treatments and the devastating loss of her "miracle" baby. She describes how this unimaginably difficult experience transformed her life into one of giving and constant thoughts of other families traversing the same landscape of the childhood cancer experience, with the BELAC Foundation in Orlando, FL.

Rhodemann Li and Clayton Larsen, co-founders of Vesselon describe the unique blending of two technologies into one platform effectively solving the problem of the blood-brain barrier in treating brain cancer. Using ultrasound and micro-bubbles, the future of pediatric brain cancer treatment could include a simple hand-held device enhancing the delivery of medication to the cancer, even the most difficult to treat diffuse intrinsic pontine glioma.

Li an Larsen describe the pre-clinical investigations and the other tried-and-true clinical uses of both microbubbles and ultrasound in treating other areas of the body, for the heart, for instance. This innovation for the challenge of the blood-brain barrier will be developed for treating not only brain cancer but Alzheimers and other neurological diseases. The technology would allow delivery of medicine for large and small molecule treatments alike, including genomic therapy, enzyme, and immunotherapy as well as standard chemotherapy treatments.

Advocacy news includes the introduction of the RACE for Children Act, the STAR Act, and the National DIPG Awareness Resolution. This technology newly developed to treat brain cancer is music to the ears of all affected by pediatric brain cancer, the leading cause of death in children with cancer. Li and Larsen are currently engaged in finding quick solutions to bringing this technology to the market for expedient accessibility, and to support the development of new and hopeful therapies for clinical trial.

Today's guest, Danielle Leach, gives the childhood cancer community helpful information about advocacy, being a parent of a child with cancer, bereavement, experience with the non-profit health industry, and more practical advice for parents. There are many ways to advocate; you don't have to go to Washington and talk to Congress to be a strong advocate for children with cancer. We learn about Mason, the enduring inspiration for the continuation of her work. Danielle Leach is Sr. Adviser of Advocacy and Government Relations with St. Baldrick's Foundation, one of the United States most successful cancer charities with regard to funding childhood cancer research. Danielle is also the co-Chair for the Alliance for Childhood Cancer, one of our country's foremost advocacy organizations. Her son, Mason, who succumbed to brain cancer in 2007, is her enduring inspiration.

CCTR interiews Christopher Winters, President of the emerging National Children's Cancer Consortium, a project of collaboration between parents, advocates, and concerned citizens with policies developed after 18 months of current, grassroots research into the challenges children with cancer and their families face regularly. The goal of the Consortium is to help local organizations and families find proactive solutions at the local and state level. Christopher Winters has an extensive background in community organizing and serving as Chief of Staff for Representative Tom Caltagirone of the Pennyslvania House of Representatives. In it's beginnings, NC3 looks to serve the national public in finding the local and State connections to help meet their needs.

The great adventure that was the 2017 World Marathon Challenge is shared with our listeners in a big-hearted interview with BethAnn Telford, brain cancer survivor and super-athlete. Seven Marathons were run on seven different continents in just seven days time. BethAnn's mission to cure brain cancer with ABC2 (accelerate brain cancer cure) is taken to a whole new level of camaraderie, unity, and the importance of purpose that she experienced with her new friends in the event as they made their way around the world. BethAnn tells us about her upcoming projects in 2017 including the Race for Hope, the Boston Marathon, and Virtual "Relay for Jack" supporting the National DIPG Awareness Resolution, H.Res.69.

Coming to you from Telford, UK, Kelly Khan tells the story of her 12 year-old son Khaleel, currently facing a relapse of leukemia. Khaleel had been a very healthy, thriving boy after having met with serious infantile diseases, pulling through them with flying colors.

Kelly tells us how the experience of leukemia affects her family, how community has shown great heart, and shares information about donating stem cells, as there is currently a search for a donor for Khaleel.

Brian Jones, creator of the Run for the Whitehouse for Childhood Cancer on Facebook joins us to describe the beginnings of the program, what it has become, and discusses the adventure of teaming up with MaxCure Foundation with Executive Director Jonathan Agin. Both gentleman are prominent US advocates for children with cancer--Brian a keen grassroots organizer and runner, and Jonathan an attorney with a talent for supporting childhood cancer legislation in even the most adverse congressional climate. The linking of this widespread movement of donating miles to support children with cancer takes on a whole new dimension in philanthropy, making it possible for anyone to make a difference for kids with cancer and get fit at the same time!

Jenny Mosier, Executive Director of the Michael Mosier Defeat DIPG Foundation joins us to discuss a 50-State Project for DIPG, calling for volunteers in as many states as possible to work for a gubernatorial or state legislature proclamation for May 17 2017 DIPG Awareness Day. The 2017 National DIPG Awareness Resolution will be introduced by Congressman Steve Knight (R-CA-25) in the US House of Representatives on January 30, 2017, designating May 17 also for a cohesive effort of Jack's Angels Foundation with Michael Mosier Defeat DIPG Foundation's DIPG Across the Map Project for DIPG Awareness. The nationwide project has over 30 states participation so far; joining us also, from the perspective of a DIPG family currently battling the realities of the disease for their daughter Brooklyn, is Nicholas Smith of Ohio. Keren Beukema of California, who lost her son Vincent to DIPG last July in a swift and devastating blow, lends her perspective to the importance of the project. Lawrence Fagan, a retired technology and medical researcher who learned of DIPG's deadly existence through the experience of others, gives critical information regarding the importance of larger, collective awareness for the disease nationally.

We may be witnessing the critical point between suffering and the proactive movement towards a solution and the momentum necessary which needs no further case to argue for change. DIPG stands for itself, and makes a precedent-setting testimonial for the deadliest childhood cancers for which research has been, historically, neglected due it's small numbers and silent constituency.