Hope for Osteosarcoma Research: #BecauseofDaniel

Professionally, Theresa Beech has had 20 years of experience as a space engineer designing satellite mission ground systems. She has worked as a ground systems engineer, technical lead, subject matter expert, and program manager for a wide variety of satellite ground systems around the world. She comes to Childhood Cancer Talk Radio with the story of her son, Daniel, who's battle with osteosarcoma ended his young, beautiful life, and left his mother determined to find solutions for this devastating disease.

As with the deadliest of pediatric cancers, there have been no innovations for osteosarcoma nor progress in survival rates in over 30 years. What makes this story so important is not only the devotion of this mother, her talent and intelligence, but her genius in applying her knowledge of systems engineering to osteosarcoma genomics-- no small feat. The result of this personal research gives new leads to greater biological understanding of osteosarcoma as well as potential solutions for treatment. Write to osteoregistry@gmail.com if you are an osteosarcoma patient, parent, or researcher for more information.

 

 

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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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Vesselon: Addressing the Challenges of Brain Cancer with Non-Invasive Technology

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. 

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"Talking Advocacy" with Danielle Leach

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. 

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BethAnn Telford: Around the World in 7 Days for Brain Cancer

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. 

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MaxCure and the Run for the White House

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! 

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DIPG Across the Map

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.

 

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#RunfortheKids and the Quest of Christopher Winters

CCTR interviews Christopher Winters, Chief of Staff to PA House of Representatives Honorable Member Tom Caltagirone about his extensive experience in public service and work since 2013 in the Childhood Cancer Community, how he became one of the fiercest advocates for kids fighting cancer and their families in the nation. We discuss Running For The Kids, why he started running, his goals, this years marathon in Philadelphia 5/17,his running team, his collaborating groups and his hopes for "Running For The Kids", as he prepares to launch that effort as a 501(c)3 organization.

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BethAnn Telford and the World Marathon Challenge

CCTR interviews BethAnn Telford, originally from Harrisburg, PA and now living in Fairfax, VA; she is a brain cancer survivor and ultra-distance runner for brain cancer research. BethAnn talks about the children who inspire her to run, and the urgently needed research for brain cancer funded by ABC2; Max Wallace, CEO, joins us also to help give a full picture of the selfless and heroic stature of this rather small but unstoppable dynamo and force for good.  On January 23, 2017, BethAnn is scheduled to begin the World Marathon Challenge, running 7 marathons on 7 continents in 7 days of time! 

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Dr. Adam Green, HGG (high-grade glioma) Research at UC Denver

Pediatric brain tumors are the leading cause of death in children with cancer, of which DIPG and HGGs (high-grade gliomas) represent a significant need for effective and timely solutions. Researcher Dr. Adam Green gives a clear explanation of the high-grade gliomas and a look into the research that he's currently working on in his own laboratory at the University of Colorado Denver. Caring for patients also at Children's Hospital Colorado, Dr. Green talks about his calling to pediatric neuro-oncology and the various pathways to this area of expertise that welcome young and upcoming researchers. With the advent of many parent-initiated foundations for pediatric brain tumor research in the last decade, the funding possibility is making the future look brighter for solutions.

 

 

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The Children's Cause for Cancer Advocacy

CCTR interviews George Dahlman, CEO of the Children's Cause for Cancer Advocacy, the United State's Premier Childhood Cancer Advocacy organization. Mr. Dahlman is responsible for identifying and advancing issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process. The focus for today's show is current legislation for Childhood Cancer, the uncertainty of a new Congress and Administration, and the predictable march forward with larger numbers and louder voices for our kids. 

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CureSearch CEO Laura Thrall

CCTR interviews Laura Thrall, CEO of CureSearch since 2012, with five years of refining purpose, innovation, and efficiency in the medical research industry to benefit pediatric cancer research funding. The primary goal and measure of the success of any new policy should be evident in patient care, access, and improved treatment options for children. The history of CureSearch is highlighted, and the intricacy of the industry is illuminated with more to tackle than simply increasing the 4% of the Federal funds for cancer research designated for pediatric research. Advocacy, the importance of the pharmaceutical industry, and pragmatic solutions to the long-standing difficulty to improving treatment options for children are highlighted. 

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Keira Wrenn: DIPG Survivor

CCTR interviews Emma Wrenn who's daughter Keira is a survivor of DIPG, diffuse intrinsic pontine glioma, a virtually unheard-of experience.  Emma shares with us the realities of diagnosis and experimental treatment, and the inevitable challenges of living with the effects of brain cancer treatment, and the anxiety by which even a clear MRI scan is accompanied.  Emma comes to us from Alford, Lincolnshire in the United Kingdom.  
Keira's uncanny zest for life and love for her friends and family continues to light up the lives of all with whom she meets.

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Make It Better Agent Ann Graham

CCTR interviews Ann Graham, founder and CEO of MIB Agents, an organization devoted to making the lives of children and young people with osteosarcoma better.  A groundbreaking conference, FACTOR, is scheduled for 2/24-25 of 2017 including experts, clinicians, patients, and families of children who have perished or who are currently battling osteosarcoma, to create new solutions for the many problems common to children with cancer.  Support the MIBagents mission at www.MIBagents.org. 

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Inside CureFest with Emily Belcher

CCTR interviews Emily Belcher, advocate, event planner, mother of a childhood cancer survivor, and CureFest volunteer, who tells us about the early days of CureFest, the events goals and influence, and the direction of the Childhood Cancer Awareness Movement.  Emily discloses her daughter's frightening experience with PNET, a pediatric brain cancer, subsequent triumph, and family's commitment to improving life for those children yet to be diagnosed. 

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Zamora Moon: Living with DIPG

CCTR intereviews Marisa Martinez, mom to Zamora Moon, a little 9-year old girl battling DIPG, diffuse intrinsic pontine glioma, arguably one of the deadliest cancers which is almost exclusively pediatric. Her pioneering journey into the unknown includes treatments in Germany and the UK. Lisa Spedale, who's daughter Kira was the first child in the United States to undergo CED surgery and treatment for DIPG, joined us with compassion and perspective. Our prayers for steadfast determination for brave Zamora continue as we follow her story.

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BPDCN: Caitlin's Story

CCTR interviews Caitlin Lee (12) and her mom, Kelly about Caitlin's recent diagnosis with BPDCN and course of treatment. Blastic plasmacytoid dentritic cell neoplasm is a rare, especially among children, acute leukemia subtype with no therapeutic protocol because it is so rare and newly categorized. Stories of hope and unparalleled strength are tempered with the pending realities of a bone marrow transplant...stem cells, and a baby donor's umbilical cord. Caitlin is a gifted student with scientific aspirations. We will be following her story with high hopes for a complete recovery.

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“Jaime’s Journey–Cancer from the Voice of a Sibling”, by Sharon Wozny

Author Sharon Wozny shares with us her first book for children facing the difficult emotional challenges of having a sibling with cancer and the effects of this on the family. Inspired by her volunteer work with the Children's Cancer Network in Chandler, AZ, Sharon describes the experiences she had as a teacher for 30 years and with the organization which helped her craft the book which is half story, half creative journal. Patti Luttrell, Executive Director of the Children's Cancer Network, joins us to explain how this and other works of the organization help local families. "Jaime's Journey" can be purchased on Amazon.com, and there is more demonstrative information about it on this Youtube link. Visit www.childrencancernetwork.org to learn more about the Children's Cancer Network.

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#KidsCancerPain and the Cancer Knowledge Network

CCTR interviews Dr. Christine Chambers of the Centre for Pediatric Pain Research at IWK Health Center in Nova Scotia, and Dr. Jennifer Stinson, nurse at the Hospital for Sick Children in Toronto about #KidsCancerPain, a new social media campaign supported by the Canadian Cancer Knowledge Network designed to help children with cancer and their parents better assess and treat their children's pain symptoms. A new application for iphone, Pain Squad, is a game-like program that helps kids manage and assess their pain needs with immediate pdf communication to their doctor, available now for free download. The social media campaign involves tweets, blogs, links to important information, and also helps parents to connect.

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Carson Leslie Foundation and the Golden Toast 2016

Annette Leslie, founder and CEO of Carson Leslie Foundation, talks to us about her son Carson and his book, "Carry Me", his inspirational story of hope that inspires the work of one of the most dynamic collaborative foundations for pediatric cancer research and support for teens with cancer. CLF is located in Dallas Texas, and Annette describes the yearly North Texas Giving drive, this year on 9/22/2016, with contributions from all over the world. Annette and CSF is the host of the 2016 Golden Toast for Congressmen McCaul and VanHollen of the Congressional Caucus for Childhood Cancer.

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Nancy Keene and Anne Spurgeon discuss new book, Childhood Cancer: A Parent's Guide to Solid Tumor Cancers

CCTR interviews Nancy Keene, well-known writer and advocate for children with cancer, and co-author of the Childhood Cancer, A Parent's Guide to Solid Tumor Cancers.  Her work has appeared in publications such as Reader's Digest, Journal of the American Medical Association, Exceptional Parent, and Coping Magazine. Co-Author Anne Spurgeon founded, and worked as executive director for, the Badger Childhood Cancer Network in Madison WI.  Both ladies are mothers of childhood cancer survivors and are dedicated to serving the Childhood Cancer Community in finding the services they need with the support they deserve. 

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September 1–Go4theGoal at the Golden Niagara Falls

CCTR interviews Beth Stefanacci and Carina Trenka of Go4theGoal, a dynamic support organization for children with cancer based in Cherry Hill, NJ, and one of the beneficiaries of the historic "Golden Steps for Pediatric Cancer Awareness Walk." The walk led by Baby Shawn who is a local young hero in Niagara Falls, NY, currently battling DIPG, commemorates the momentous occasion of the Niagara Falls "going gold" for childhood cancer awareness. Go4theGoal helps kids with cancer achieve their goals, supports cancer families, and also supports local institutions which care for children with cancer.

Midway through the show, our host received a notice from the Office of Science and Technology Policy with the following attachment: 2016childhoodcancer.prc.rel President Obama's Childhood Cancer Awareness Proclamation 2016 had just been signed, and it was read on the show.

In our final segment we were joined by "Driven Change", Ronnie Duvall, Childhood Cancer Awareness activist more than half-way through his 50 state journey.

 

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The Legislative Landscape of Childhood Cancer Drug Development: Jonathan Agin JD

CCTR interviews Jonathan Agin JD, father of Alexis who perished to brainstem glioma in 2011 and 4 other young children, and official counsel and co-founder of the Children's Cancer Therapy Development Institute. One of our country's foremost advocates for children with cancer, Jonathan describes the complexity of our medical research system and the challenges to funding pediatric cancer research, and the importance of advocacy. PREA, the Race for Children Act, and the Childhood Cancer STAR Act are among the pieces of legislation discussed, and their importance to progress with pediatric cancer research.

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Michael Esposito: Niagra Falls leads the US for Childhood Cancer Awareness Month

CCTR interviews Michael Esposito, father of five, teacher, and basketball coach, the man responsible for connecting people in his town of Niagra Falls, NY which will witness the most prominent and powerful display of support for children with cancer this year, 2016.  Baby Shawn with DIPG and his meeting Stephen Curry, the prospect of the NFL going gold for a week in September, Go 4 the Goal, PUNT, and Neal Rourke's 2000 mi bike ride from Niagra Falls to Key West with TRF.org are all part of the discussion around the big event on September 1st in Niagra Falls.  Updates on livestreaming for the September 1 event will be available at jacksangels.org.

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Live from cc-TDI Pediatric Nanocourse 2016

Live from the Children's Cancer Therapy Development Institute, CCTR interviews 4 participants of the 2016 Pediatric Cancer Nanocourse, an introduction to the scientific research process and an opportunity to build a network of informed and empowered advocates who can drive the cure of rare cancers. cc-TDI has for its mission to bridge the gap between promising research and actual therapies for children with cancer.

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Step UP! Action and Awareness: Advocacy with Neal Rourke and Jesse Robinson

CCTR talks with Neal Rourke and Jesse Robinson about the Childhood cancer Awareness Movement and the upcoming September, Childhood Cancer Awareness Month.  Lighting, "Going Gold", the Maggie Project, and Tyler Robinson Foundations's Project CANCO are featured.  CANCO is a bike ride planned to begin Sept. 1 from Niagra Falls, Canada to Key West, FL for 2200 miles. Gifts of $10,000 will be given to needy families with a child afflicted with cancer along the way, for a total of $100,000. Action is underlined as being just as important as Awareness for changes to occur in the system to better accommodate our children with cancer.

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Dr. Mark Swouweidane: On a Mission to Cure DIPG

CCTR interviews Dr. Mark Souweidane of the Weill Cornell Medical College and pioneering neuro-surgeon in the United States, known especially for the ground-breaking clinical trail with Catheter Enhanced Delivery (CED) of medicine to the DIPG tumor, currently with no survivors. The trial shows great promise of extending life for many trial participants.

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Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation

Jenny Mosier, co-founder of Michael Mosier Defeat DIPG Foundation, joins CCTalkRadio and discusses her son Michael and his journey with DIPG, and how his fight inspired the #defeatDIPG Foundation which is now in 3 regions of the United States within a year. Dedicated to finding a cure for the deadliest pediatric cancer, Jenny's encouraging manner and all-inclusive style of camaraderie with her DIPG parent-peers has revitalized the DIPG community with hope in the real effects of parent-funded research.

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Driven 2 Make Change: Activism on the road for our kids!

Today's show features Ronnie Duvall, "Driven Change" on facebook, one who truly walks the talk of his values.  Ronnie gave up his job and home to drive all 50 states in his quest for greater knowledge in how to create an organization which will truly address the needs of children with cancer and their families.  "Life is full of opportunities to make a difference; pick yours and never look back while being what you're meant to be."  Ronnie's location will be a surprise as we connect this afternoon; for his most recent experiences, visit his page Driven_2Make_change on facebook.  A true activist, he lives and breathes telling the truth about a medical research system which is directed by profit and not so much for saving lives, and he doesn't give up the fight to raise awareness for and change the meagre 4% afforded to childhood cancer research by the National Cancer Institute.  CCTR's Hero of the Week!

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Creating Hope: Nancy Goodman

CCTR interviews foremost advocate for children with cancer, lawyer, and mom to Jacob, forever 10, 2009, Nancy Goodman.  Nancy brings us news of the RACE for Children Act, a reform of the Pediatric Cancer Research Equity Act or PREA which she champions, and it's to go to both House and Senate 7/14/2016.  Nancy is a true problem solver in her can-do approach to lassoing the pharmaceutical industry with incentives to support and fund pediatric cancer research.  In her work, Nancy appeals to the intrinsic goodness of people who truly want to help children with cancer, yet are strapped by the system.  In "finessing the system", solutions are found that support other proactive missions to prioritize pediatric cancer research.  Also, inside news of the Washington DC Moonshot Taskforce Summit, and that Washington will host the first Pediatric Moonshot Summit, which was news to all of us.  Good will, hope, and information on the 2016 Curefest and Summit for the Congressional Caucus for Childhood Cancer are featured.

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Laurie Johnson, Professional Psychic Advisor

CCTR interviews Laurie Johnson, psychic advisor and teacher of the metaphysical arts, who addresses the issue of childhood cancer, and cancer in general and what that means in the greater scope of our reality.  Karma, life lessons, re-incarnation, pre-lifetime agreements are included in the discussion, and also the importance of realizing there is no "fault" or "mortal moral cause" of cancer, a particularly troublesome topic for parents.  Two examples of life situations for families of a child who was diagnosed and passed on were investigated by Laurie with her expertise and feedback for the parents.

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CCTR6-16: The Ride for DIPG

CCTR interviews Jesse Shumaker, a brave and loving dad who just lost his only child Madelyn 6 months ago to DIPG, the deadliest brain cancer with no survivors.  Jesse founded the Nebraska Chapter of the Cure Starts Now, an organization dedicated to funding research for the "homerun cure" for cancer.  Jesse's brother Morgan is currently on the road with Team Maddie, 4 cyclists tackling 4000 miles of road across the United States, having begun June 1st in Oregon, and slated to finish in Virgina Beach VA sometime in August.  The "Ride for DIPG" has for it's goal to raise $16,000 for DIPG research.  To follow the team and donate to the Ride for DIPG, visit www.RideforDIPG.org.

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Team Ellie from the UK

From the UK, Ellie Waters, 15, joins CCTR to talk about her journey with alveolar rhabdomyosarcoma and life as a teen with cancer; her mum Samantha Waters, joins us also.  Ellie has a twin sister Olivia, and brother Bailey from her mum's new marriage. and Ellie has 2 step-brothers from her dad's new marriage, so it's quite a large extended family of support and it keeps Samantha extra busy!  You can follow Ellie's journey at www.teengirllivingwithcancer.blogspot.co.uk, and be inspired by this beautiful and strong young girl's story.  On social media, TeamEllie Blog on facebook, teamellie_blog on Instagram, and TeamEllie on youtube.

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CCTR Interviews Morgan Platt, 12 yr. old and 5 year survivor of GBM

Morgan Platt, 12 years old, 5 year survivor of GBM from Avon CT tells CCTR about her finishing a fundraiser for her two favorite charities, to the tune of $14,000.  Truly and inspiration, Morgan undergoes continuing chemotherapy and is beset by many sleepless nights and nausea...but her bright and shining personality cast out any cloudy thinking.  Indeed, her positivity is unusually bright and pervasive and is present in all who know her.  Mom Kathy relays a bit about how difficult the constant knowledge of the deadliness of GBM, and Morgan's unusual beating of the odds can be very difficult despite the outer appearance of wellness.  Brother Kyle talks about his upcoming charity project with his school, proud of his creative success.  Featured:  Tyler Robinson Foundation, Sunshine Kids 

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Kathy Riley and We Can Pediatric Brain Tumor Network

Kathy Riley talks to CCTR about We Can Pediatric Brain Tumor Network, which began 20 years ago with the support and camaraderie between mothers of pediatric brain tumor patients.  The support and healing which came from their sharing was so helpful that they wanted to share it with others.  The pediatric brain tumor community is small and underserved.  Parent-based support is crucial and irreplaceable for families of the newly diagnosed child.  Kathy explained how We Can grew and developed to now serve in northern and southern California in providing a number of essential programs of support for children with brain tumors and their families.

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ABC2: Funding Creativity in Brain Cancer Research

Max Wallace, President and CEO of ABC2--Accelerate Brain Cancer Cure, talks about founder and venture capitalist Dan Chase who had been afflicted with and ultimately died of brain cancer.  ABC2 has for a model Dan's genius for taking risks fearlessly and applying the venture approach to brain cancer research and treatment, "The Valley of Death" where such funding is deperately needed, coining the term venture philanthropy.'  Max also talks about some of the most innovative and potentially cure-contributing reearch projects which ABC2 is supporting.  Visit ABC2.org for more informations.

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cc-TDI: Exciting New Prospects for Children with Cancer (Science)

Today's show features creative solutions to difficulties in treating childhood cancer with the Children's Cancer Therapy Development Institute, cc-TDI, devoted to making all forms of childhood cancer survivable.  Co-founder, advocate for kids with cancer, and writer Jonathan Agin, and Scientific Director Dr. Charles Keller, talk with CCTR.  Learn about a new research project for DIPG, rhabdomyosarcoma; new scientific breakthroughs in procedure and feasibility are highlighted.  Stay tuned for Part II!

 

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Gina Renay and Owie BowWowie

Darkness to light, despair to a single smile...these transformations caused by magical stuffed toy-doggie Owie BowWowie are regular occurrances when he's around!  Helping kids and families in their most difficult moments, Owie's comfort brings love and support to children with critical illnesses, and their families.  Listen as Owie plans his new debut and launch in the world of childhood cancer awareness!  Founder of Owie BowWowie and Friends Foundation Gina Renay explains how Owie came to be, and how he is finding his place in the world.

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Congressman Knight and HRes586, and the Activist Runner's Roundatable 4-21

 

We are on the road, literally, with Childhood Cancer Talk Radio!  Congressman Steve Knight (R-CA-25) joins CCTR to talk about HRes586, National DIPG Awareness Week, and the importance of the bill at this time--from the author himself.  Then we are joined by a runner's roundtable of activists for children with cancer, including John McKay, Brian Jones of the Run for the Whitehouse, and Everett Smith, currently running 200 miles in Southern California for HRes586 and DIPG Awareness.

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The Realities of DIPG

Jaime King, mother to Katie(7), aka Katherine the Brave, and Mark Landis, father to Parker (5), describe the realities faced by parents of DIPG-diagnosed children today.  DIPG, diffuse intrinsic pontine glioma, is an invariably terminal pediatric brain tumor with no change in treatment protocol for over 40 years.  Parents discover routinely that there are no solutions for their child because, "the numbers aren't great enough for investors."  With candid descriptions of the new realities faced after diagnosis, the parents explain how they cope and what they must do to keep going and to understand the meaning of hope.  Their voices are a testament for the importance of HRes586, National DIPG Awareness Resolution, advocacy, and change for these children on cancer's literal death-row for kids.

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Dr. Kathy Warren on DIPG, Michael Antonellis of National Brain Tumor Society

CCTR presents Dr. Kathy Warren, top researcher in pediatric neuro-oncology at the Center for Cancer Research at the National Cancer Institute (NCI), who discusses the history of DIPG research and the nature of this strange and misunderstood tumor, challenges to treatment, and hopeful new lines of research for effective therapies to be developed.  We were treated to a brief lesson in pediatric brain tumors by one of the worlds greatest experts on the subject of DIPG, diffuse intrinsic pontine glioma.  Dr. Warren stressed the importance in parent advocacy for encouraging world-wide scientific collaboration in the research.  We focused brain tumors and advocacy for the 2nd half of the show with Michael Antonellis, who described the unique opportunities that the National Brian Tumor Society (NBTS) for those called to advocacy, encouraging participation in the upcoming "Head for the Hill Days" in Washington DC.  NBTS advocates for the need of research for both adult and pediatric brain tumors, and explained the many differences complicating the treatment landscape.

 

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CCTR interviews Paul Miller of Littleton CO, advocate and hero for kids with cancer

CCTR asks Paul Miller about his extraordinary commitment to speaking out for children with cancer, and about the truth of our medical research system:  our kids are ignored, and have been for decades.  Paul talks about his volunteer work with St. Baldrick's Foundation, which, unlike other large cancer charities like ACS which pays significant administrative salaries, St. Baldrick's is the #1 funder of childhood cancer research with over 80% of it's budget affecting research.  He talks about the awareness of this reality that children face--their lives being less important than investment returns to our system--and the prospect of death or a seriously impaired life, and his dedication to those children.  "We are their only hope".

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Gerry Tye: Father, Advocate for Children with Cancer--Australia's Best

Gerry Tye of Sydney, Australia talks to CCTalkRadio about the experience of an exceptional child lost to an exceptional disease...DIPG is the "Angel Disease" and we hope that the loving, living memory of our children continues to inspire advocacy work for children with cancer and their families that exacts progress where those currently struggling need the support and leadership.  The importance of "end-of-life" care and a strategy that protects your sense of decency and humanity.  Hope for new collaborations in research efforts to save our children and to insist on prioritizing the fight for their survival.

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CCTalkRadio Presents: Gerry Tye, advocate for kids with cancer

Advocate for children with cancer Gerry Tye shares the experience with his son Talin, diagnosed with DIPG in 2012, and for parents the importance of trusting one's instincts regarding one's own child when confronted with medical protocol for terminal illness.  Gerry supports children diagnosed with cancer and their families in Australia and New Zealand.  Next week's edition is Part II of our conversation :)

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CCTR Presents George Dahlman of The Children's Cause Cancer Advocacy

George Dahlman talks about the importance of advocacy in affecting change in legislation and the way our Administration, Congress, and Government Agencies communicate to better accommodate the needs of our children with cancer.  Host Janet Demeter enjoys a rant about the "Great Cop-Out of Capitalism" for our kids with cancer, as numbers are often used as the excuse for the decades of systematic neglect.  Hopeful solutions are emerging for seemingly impossible, age-old problems.

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CCTR Presents Mattie Miracle

Peter Brown and Victoria Sardi-Brown tell the story of how their foundation began in 2009 after the death of their precious boy Mattie, 7, who had been diagnosed with osteosarcoma.  Mattie Miracle Foundation has a powerful advocacy mission emphasizing the need for psycho-social standards of care for children with cancer and their families.  The Foundation coordinated a world-wide, interdisciplary project to present evidential experience for the need of these Standards.  Their work continues strategizing the implementation of these standards while giving support to families affected by childhood cancer in the Washington DC metropolitan area.

 

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CCTR Presents Cannakids and Saving Sophie

CCTR interviews Tracy Ryan, founder and CEO of CannaKids, an organization dedicated to providing the highest quality guidance, care, and cannabis medicine to seriously ill patients, especially pediatric cancer patients.  CannaKids was inspired by Tracy's daughter Sophie, who was diagnosed at 8 1/2 months with brain cancer, and is a living testament to the curative powers of cannabis when conventional medicine fell short.

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CCTR2-18-2016 Kira Spedale Foundation

Lisa Spedale reveals the heart-wrenching motive for her involvement in one of the most genius technological advancements in the history of neuroscience.  Leo Somerville of technology company Renishaw Inc was changed forever by the heart of one little girl, Kira, afflicted with terminal DIPG.  Her brave fight aided the development of a procedure which promises longer and better quality of life for children with DIPG; sadly typical of pediatric cancer, the only barrier is funding.

 

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New Hope from the U.K. for Brain Cancer

Emma Wren of  Alford UK, explains the realities of a DIPG diagnosis for her daughter Keira, and the experimental program with which Keira is involved to combat the deadly disease.  Sharon Kane of "Funding Neuro", joins us to discuss the technical details of the procedure and the origins of this research, and Funding Neuro.  The fate of Keira's future peers with brain cancer rests upon her pioneering journey. 

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CCTR interviews Jonathan Agin and Charles Keller MD of CC-TDI

Thursday, Feb. 4 CCTR interviews Jonathan Agin, Development Liaison and General Counsel for the Children's Cancer Therapy Development Institute, or CC-TDI, a non-profit biotech company dedicated to eradicating childhood cancer in all its forms.  Jonathan is an attorney by trade and has become one of the united State's foremost advocates for children with cancer following the death of his daughter Alexis in January of 2011.  Scientific Director Charles Keller MD also joins us to describe the very innovative and proactive design of this company, addressing the "pre-clinical gap" in our medical research system that has resulted in the neglect of the deadliest childhood cancers, many of which have been awaiting effective therapy development for decades.  For more guest info, visit:  bit.ly/CCTRguests

To support Jack's Angels campaign for DIPG research at CCTDI, visit:  bit.ly/Relay4Jack

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CCTR discusses loss and faith with Lisa DeLong, and how to live, find balance and joy once more.

Lisa Solis DeLong

Lisa Solis DeLong, author, nurse, bereavement facilitator, patient advocate, and last but not least--mom!--joins us for a candid discussion of her experience raising two sons with cancer, loss and faith, and how she found new joy in life after losing her son Justin.  Join us Thursday, January 28 at 4pm Eastern, right here on Toginet.com.

Lisa's Book, "Blood Brothers"-a memoir of faith and loss while raising two sons with cancer:

     http://bit.ly/LisaDelong  (on amazon.com)

Tedx video on "Death Cafe" link:  

     http://bit.ly/lisadelong   (on youtube)

Full article:  http://jacksangelsfoundation.com/?p=3926

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CCTR talks with Ellyn Miller of Smashing Walnuts Foundation for pediatric brain tumor research.

1/21/2016

Ten-year-old Gabriella Miller was herself a strong advocate for children with cancer, and the inspiration for Smashing Walnuts Foundation; sadly, she passed away from DIPG in October of 2013.  The following April, 2014, President Obama signed into law the Gabriella Miller Kids First Act which allocates funding for important pediatric resarch through the National Institutes of Health, to the tune of $12M in the next 10 years.  Her legacy is strong throught the continuing advocacy work of her mother, Ellyn Miller, who tirelessly lobbies members of Congress and the NIH to achieve a system that prioritizes cancer resarch for children.

 

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CCTR Presents: Jaime King and daughter Katie, Kristine Wetzel of McKenna Claire Foundation

1/14/2016

Jaime King describes the difficult experience of the terminal diagnosis for daughter Katie with DIPG, the most aggressive pediatric brain tumor.  The experimental drug Panobinostat has shown great progress in battling the disease but Katie's time for access to the expensive treatment is running out.

Kirstine Wetzel shares her experience with the power of Community and their success in raising funds for pediatric brain tumor research.  The McKenna Claire Foundation gives support to families like Katie's in the unending battle to raise awareness for the urgent need for a cure.

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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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