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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."

 

The House that Hope Built in Zurich, with Philip Manduca

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 and drug concentrations mattered even more than the drug itself. Most of all, he realized from the first prognosis that he had no time to lose by choosing old therapeutic pathways to a constant morbid outcome.

Since then Philip has served as treatment advisor with the DIPG Treatment Advisory Council, and has been instrumental to the development of the new, international treatment program for DIPG and mid-line glioma at Zurich Children's Hospital in Switzerland, offering personalized treatments and multi-modality developments in the latest research in pediatric neuro-oncology. Because of the controversial nature of experimental research and treatment for children, the program's development has been somewhat guarded from public view until now.

Philip shares in all candor the courage that it takes to speak truth to power and take the action necessary to facilitate real change, and most importantly, hope for children with brain cancer, the leading cause of death in children with cancer.

 

 

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Kier's Kidz and Songs of Love

Larry Perfetti, President of Kier's Kidz, a 501(c)3 charitable organization in Highland Park, NJ, dedicated to helping children with cancer and their families and supporting childhood cancer research, joins us along with Caroline Kratka, Genetics major at Rutger's University Honors College, who serves on Kier's Kids Advisory Board and shares about youth engagement and advocacy with the foundation. Kier's Kids was inspired by the hopes and dreams of Larry's daughter Kiersten who succumbed to alveolar rhabdomyosarcoma when she was just 22.

Songs of Love President John Beltzer also joins us to share about the healing gift of music that is his organization's mission, also a 501(c)3 charity, dedicated to uplifting the spirits of children with life-threatening illness or permanent disability.  Artists from around the world create professionally produced songs in the child's favorite genre, including aspects of the child's life, hopes, dreams, and likes. Beltzer's work is inspired by his musically talented twin brother, Julio, who died in 1984.

 

 

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The Pepper-Neely Act of 1946 and the Fitzgerald Report of 1953, with Randy Hinton

How did we get here, with a medical research system teaming with money and activity, but so few solutions and options for deadly cancers, especially pediatric cancers? Randy Hinton, of Cross Hill South Carolina, is a childhood cancer advocate and father to Hayley who died of DIPG in 2006, diagnosed in 2005 at just 5 years of age. He brings us an in depth report of the early years of the AMA, drug companies, and the doctors who would not be bought. 

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Meet "Tattoo Tom" Mitchell: Father, Activist, Founder of Still Brave Foundation

Following the death of his daughter Shayla in 2009 from Hodgkin's Lymphoma Tom dedicated his entire life to providing non-medical support to children with cancer and their families. He's also committed to raising awareness of the need for more research funding and safer, less toxic treatments for children with cancer.

An extreme runner, he completed a 200 mile run at Lake Tahoe in 2015, and has been featured in an award-winning documentary and Emmy-winning news stories of his exploits. To date he has raised over $800,000 for Stillbrave just through his ultrarunning endeavors.

But on a regular day, you're likely to find him on a personal visit either at the chemo clinic or at a child's bedside, or on the streets of Washington D.C. carrying a sign, loudly and unapologetically vocal about what matters most, awareness for our children with cancer and the urgent need for solutions for them.

Get a sneak-peek at his upcoming 200 miler in Washington State where he will be accompanied by a childhood cancer survivor to make "Team Two-Feathers" for StillBrave Foundation, and take heart in a personal story of transformation and hope.

 

 

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“Moonshot4Kids” at Monje Lab: DIPG Families Advocate for Increased Pediatric Cancer Research Funds

June 7, 2019 | Mia Brozovich Nacke 

 

June 7, 2019 | Mia Brozovich Nacke

COMMUNITY OUTREACH, EVENTS, PEDIATRICS, RESEARCH AND INNOVATION.

Families who have lost children to Diffuse Intrinsic Pontine Glioma, a fatal brain tumor with a median survival of 9-10 months, met with Stanford pediatric neuro-oncologist Michelle Monje to learn about new clinical trials and express optimism that accelerated funding will yield treatment results.

DIPG families visit the Monje Lab. From left to right, Marisa Martinez, Xavia Martinez-Lusinchi, Kirsten Finley, Zach Major, Robby Larson, Keagan Finley and Janet Demeter.

On May 17, DIPG Awareness Day, four families who donated their late children's brain tumor tissue to science convened at Stanford to hear firsthand from pediatric neuro-oncologist Michelle Monje, MD, PhD, about research developments and new clinical trials that may hold the key to unlocking treatment for Diffuse Intrinsic Pontine Glioma (DIPG). 

DIPG, a highly aggressive tumor of the brain stem, is the leading cause of childhood brain tumor deaths. There is no cure for DIPG; radiation treatment can extend a child's life by mere months.

To help call awareness to DIPG-and learn more about groundbreaking research-congressional staff from Sacramento and Washington, DC, joined DIPG families in Stanford's Lorry I. Lokey Stem Cell Research Building for a presentation by Monje, followed by a tour of the Monje Lab.

During a Monje Lab tour, Michelle Monje, MD, PhD, center, talks with Brian Perkins, District Director, Office of Congresswoman Jackie Speier (second from left), and visiting families who are raising awareness and funds for DIPG.

Joining the roundtable were the offices of U.S. Representatives Jackie Speier and Anna Eshoo, California State Senators Jerry Hill and Scott Wilk, and California Assembly member Marc Berman.

Several of the families present have started foundations to support DIPG research and assist other families in navigating the brutal illness. They know all too well that a DIPG diagnosis is fatal.

Each year in the U.S., DIPG strikes 200-400 school-aged children. DIPG peaks at around age 7, but occurs in both younger and older children. According to Monje, we now know DIPG can also strike adults. With standard therapy, median survival is 9-10 months. Five-year survival rates are below 1 percent.

Discoveries drive human trials

Researchers at work in the Monje Lab, part of the Department of Neurology & Neurological Sciences at the Stanford University School of Medicine.

Identifying effective chemotherapy for DIPG has been challenging. Because the tumor grows in the brainstem, a region that controls essential body functions such as breathing and heartbeat, and because these cancer cells grow tangled with healthy cells, the tumor cannot be surgically removed. While other pediatric cancers have seen vast improvements in survival rates with new treatments, the survival rates for DIPG children have not improved in 40 years.

Monje, who has been a leader in DIPG research for the past 10 years, is hoping to change this. In 2009, Monje's research team was the first in the world to grow laboratory cultures of human DIPG cells from deceased donors. This gave scientists their first opportunity to study the cells' growth, as well as a platform to identify and test chemotherapy agents that fight DIPG. Monje's team also created mouse models of DIPG to allow detailed studies of the tumor's growth and to test possible treatments.

The team is currently running a Phase 1 clinical trial in children with DIPG of the drug panobionstat, which slows DIPG growth and increases survival in mice with the tumor. Recently, Monje and her colleagues demonstrated that engineered immune cells, called chimeric antigen receptor T cells or CAR-T cells, can eradicate several types of brain tumors in mice, including DIPG. The team is planning a human clinical trial for this treatment.

A horizon of hope

Speaking to the families who had traveled from as far away as Florida to raise awareness for a disease that strikes at the heart of childhood, Monje asked, "Why have we failed DIPG children for so long?

"DIPG is ‘the worst of the worst.' Historically, DIPG has been difficult to study. Eleven years ago, when I started studying this disease, there were no cell cultures, no experimental mouse model systems. Finally, we have the resources to begin to untangle the biology of this disease." 

Kirsten Finley, Marisa Martinez and her daughter Xavia, and Janet Demeter share a moment together during DIPG Awareness Day. 

"As we see in this room, that families of children affected by DIPG are extraordinarily giving. Families who have been affected by this disease have pushed the needle forward."
Michelle Monje, MD, PhD

The donations of DIPG families will help other generations of children, said Monje. Research has already shown that DIPG shares a mutation with other high-grade gliomas like spinal cord and thalamic gliomas, which has led to a reclassification of these cancers. These somewhat less common but still fatal diseases may benefit from DIPG research.

With the aim of giving DIPG children a longer period of good quality of life - and envisioning a cure within our lifetime - the Monje Lab openly shares tumor tissue resources that generate cell cultures with over 200 labs around the world.

Meet the Kids: Images of children lost to DIPG, including Kayne Finley (top left), Jack Demeter (top right) and Zamora Martinez-Lusinchi (middle row, second from right)

According to the National Pediatric Cancer Foundation, only 4% of federal government cancer research funding goes to study pediatric cancer. The Monje Lab benefits from diverse funding streams, including from the National Institutes of Health (NIH); DIPG families have also stepped up by raising research funds. But the funding gap for DIPG, and pediatric cancer research in general, remains significant.

Congresswomen Speier and Eshoo, longtime supporters of increased federal funding for childhood cancer research, both addressed letters to the families gathered at the event and the Packard Children's Hospital community. Noting that DIPG Awareness Day is intended to encourage research into DIPG and pediatric cancers in general, Speier praised the Monje Lab's groundbreaking work. 

Stanford pediatric neuro-oncologist Michelle Monje, MD, PhD

"Thanks to the work of Stanford researchers, including notably Dr. Michelle Monje and her team, there is reason for hope."
U.S Congressional Representative Jackie Speier

"What we need to do," Speier suggested, "is support NIH research into this important childhood disease, and to encourage the FDA to support the testing and ultimately the approval of needed treatments."

Eshoo encouraged the families to continue their advocacy, which she acknowledged is vitally important to children facing deadly diseases.  "Children are not just small adults," stated Eshoo, adding that drugs need to be studied specifically for their use in children.

The State Senate and Assembly offices of Jerry Hill and Mark Berman presented Monje and the Monje Lab with Certificates of Recognition to acknowledge the impact of the Monje team's research. 

Moonshot for kids

The families spoke candidly about how meaningful Monje's work is to their mission to encourage public engagement and support for DIPG research, trials and treatment. Having faced DIPG's devastating statistics head on, they agree that greater awareness and scaled-up funding would be game-changers.

"When my son Kayne was diagnosed," said Kirsten Finley, "it felt helpless, hopeless and like nothing you did would make a difference. Your leadership and commitment to saving these children, Dr. Monje, makes a huge case for more NIH funding. We have to attack and address it."

To draw attention to DIPG and raise research funds, Kayne's brother Keegan is bicycling cross-country with friends. "We all know that this disease is underfunded," he told the audience. Older than most DIPG patients when diagnosed at age 17, his brother became an advocate for brain cancer awareness while undergoing clinical trial treatments. Kayne used his 366 days after diagnosis to start college, speak to schools and businesses about DIPG, and meet with his state's governor to urge funding for childhood cancer. 

Marisa Martinez comforts her daughter Xavia, in front of a photo of her late daughter and Xavia's sister Zamora, who was diagnosed with DIPG at age 7.

Janet Demeter, who lost her 3-year-old son Jack to DIGP, hosts a talk radio show dedicated to childhood cancer and raises awareness of DIPG through her foundation. Demeter coined the phrase "Moonshot4Kids" to evoke the Cancer Moonshot initiative and illuminate how we must aim high to fast-track new therapies for children with cancer.

"Every child is a life, not a number. Someday in the future, the experience for families with a DIPG diagnosis for their child will be one of hope."
Janet Demeter, mother of DIPG child Jack

On May 23, the United States Senate passed S. Res. 223, a resolution expressing support for the designation of May 17, 2019 as "DIPG Pediatric Brain Cancer Awareness Day." On February 12, Rep. Jackie Speier and Rep. Dave Joyce introduced a similar bipartisan resolution, H. Res. 114, in the House of Representatives. H. Res. 114 currently has 42 cosponsors.

To learn more about how to raise awareness and funds for DIPG Research in your community, contact Lucile Packard Foundation for Children's Health: https://supportlpch.org.

 

 

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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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