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Welcome to Childhood Cancer Talk Radio powered by Jack's Angels Foundation where we talk about real experiences, advocacy news, developments in research, and today's heroes for kids!

For guest and promotional information, download our "Prospective Guest Letter."

Our primary purpose is to provide a powerful voice of hope in the advocacy/activist movement for our children with cancer, and to encourage more conversation in the world at large about prioritizing our children afflicted with cancer in our medical research system. Currently, very little of our government budget for cancer research benefits pediatric cancer directly, while cancer is the leading cause of disease-related death in children in the United States. The system is driven primarily for short-term investment profits rather than the long-term gains in creating new industry and jobs that scientific breakthroughs, and in this case a cure, would typically bring. 

We focus on what actions are being taken currently, by parents, advocates and activists, and our representative voices in Government on the behalf of children to prioritize them in our system. Our workers in the science and tech world devoted to helping create a more responsive system are welcome to share their news and innovations to greater public awareness and application. And of course, we invite our scientists on the front lines of research and clinical work to share their developments, new directions, and hope.

We work for the day when no parent hears there's no solution for their child because, "the numbers aren't great enough for investors."

 

Batten Juvenile Disease CLN3, a Genetic Nightmare

Christina Bouraimi (mother) and Nick Maroulis (nurse) join us on CCTalkRadio from Athens, Greece to tell the story of a brave young man Theodore who lives day by day with progressed symptoms of Batten Disease, CLN3. There are 10 identified types of Batten Disease, which is itself one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats). Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes seizures, visual impairment/blindness, personality and behavior changes, dementia, loss of motor skills and the ability to walk, talk and communicate. The arc of Batten disease can vary tremendously for each person due to widely varying genetic mutations; until more progress is made in research and treatments, Batten invariably results in an early death.

Christina describes the fairy-tale like joy of life prior to Batten, and the nightmare that ensued as her youngest of two boys went through the journey of diagnosis with Batten Juvenile CLN3 at the age of 6, which was unknown in Greece at the time in 2002. They received diagnostic news from U. Rochester in the United States, from Finland, and Germany to fully understand the scope of the illness. Theodore lives now a rich and well-scheduled life, enjoying music, political conversation, and following sports despite his loss of sight, cognitive and emotional challenges, and the threat of a deadly prognosis. Christina's resolve to fight for her son in the difficult financial climate characteristic of life in Greece, and Nick's compassion for the boy's desire to live fully without question earns them the "Hero of the Week" title on Childhood Cancer Talk Radio; we salute Theodoros!

In the United States, visit www.BDSRA.org for more information about the Batten Disease community, clinical trials, current research, and support. In the UK, www.bdfa-uk.org.uk/; currently there are no support systems for the afflicted nor is the disease recognized to allow State provided medical assistance. Childhood Cancer Talk Radio is reaching out to the greater global community for financial ingenuity and assistance for helping families like Theodore's in a country where gofundme and other such platforms for crowdfunding do not operate.

Please contact cctalkradio@gmail.com to forward helpful information or financial arrangement proposals for the family. Thank you!

 

 

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Roy Wiegand: Going the Extra Mile for Kids

On April 13 2017 Childhood Cancer Talk Radio interviewed Roy Wiegand of Burbank CA, suburb of Los Angeles, a local free-lance  musician with an evolving career as ultra-distance runner and advocate for children with cancer.  Roy began running later in life in his early forties, and has been "ultra-running" for about 7 years now, prompted initially by his association through his church with an Ethiopian gentleman who was visiting to raise awareness for the urgent need for clean water access in his native country.   This inspired his church to host a 100-mile bike ride with Roy leading the effort to make this event a staple fundraiser for the charity Lifewater, and challenge to riders with at 12,000 foot gain in elevation for the event.

Running for causes came naturally to Roy so that when he came across the Wilke family and their son Christopher, a boy-scout friend of Roy's son who had been diagnosed with a rare form of cancer with little hope for survival, he was inspired to run and raise funds for the local foundation supporting the Wilke family in their struggle.  The Michael Hoefflin Foundation in Santa Clarita, CA, supports local families fighting childhood cancer in Southern California, and Roy has now run to raise funds for the foundation for the past four years.  June 14th 2017 he will run his fourth ultra-distance run, this being 131 miles-his longest run yet-to support the Michael Hoefflin Foundation.

 

 

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Elizabeth Psar: Mom on a Mission Against DIPG

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. 

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National Cancer Institute’s Office of Advocacy Relations: A Conversation with Patrick Mahoney

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. 

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BELAC Foundation: Caleb Williams Legacy

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. 

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Recent Shows
Title Date
Batten Juvenile Disease CLN3, a Genetic Nightmare
04-20-2017
Roy Wiegand: Going the Extra Mile for Kids
04-13-2017
Childhood Cancer Talk Radio 03-30-2017
03-30-2017
National Cancer Institute's Office of Advocacy Relations: A Conversation with Patrick Mahoney
03-16-2017
B.E.L.A.C. Foundation, Caleb Williams Legacy
03-09-2017
Vesselon: Addressing the Challenges of Brain Cancer with Non-Invasive Technology
03-02-2017
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About Janet


Blessed with varied interests and an artistic and musical upbringing, Janet had health challenges throughout her young adult life. Despite these she graduated Cum Laude from Wellesley College with an award of distinction for acting, and had also been a champion equestrian. She began a family with her husband Barry later in life, and had finally found happiness with daughter Sophie-Marie (3/12/06) and then baby (Jack 8/30/08). Five weeks after his birth, the family escaped a wildfire in which all worldly possessions were lost. The family relocated in December of 2008 to Agua Dulce CA where they currently reside.

Jack began to have unsettling symptoms at the age of 3; he was taken to Children's Hospital Los Angeles and was diagnosed with DIPG, or diffuse intrinsic pontine glioma, on Friday Oct. 28, 2011, indisputably the darkest experience of Janet's life. The outrage of it made her determined to find the good in the situation, and she asked God to "Put me to work!" After Jack's death, she remained determined to start working to find solutions to DIPG and incorporated Jack's Angels at the end of 2012; the Foundation began its work in 2013. Despite the fact that DIPG is responsible for the majority of brain tumor deaths in children, she had been told there were no solutions for Jack because "the numbers aren't great enough for investors." This remains the primary motivation in her advocacy work, to prioritize children's lives in our medical system in the United States.


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