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Childhood Cancer Talk Radio promotes Awareness of this very real and prevalent affliction, providing a forum for conversation and advocacy in a growing community of affected families, de-mystification of the experience with personal stories, information and resources. Let us be your voice. We aim to help people connect and support one another, and be a voice for prioritizing our children in cancer research.
 
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show series
 
Jeni Miller joins us from her home in New Lothrop Michigan to share the story of Braden “Buddy” Miller and the Foundation that is now his legacy. The Team Buddy Forever Foundation is on mission to fund awareness of pediatric brain cancers while assisting families of children diagnosed with DIPG, giving them the necessary financial support and netwo…
 
This episode features an interview with Jessica Hester, CEO of Brooke's Blossoming Hope for Childhood Cancer Foundation, a tour-de-force organization inspired by the beautiful life of Brooke Hester. The foundation's two-fold mission first empowers others, especially children, to make a difference for children with cancer by raising awareness throug…
 
For this special edition of Childhood Cancer Talk Radio, our guest is a childhood cancer survivor of a diagnosis which, statistically speaking, takes most every life afflicted. Numbers and statistics guide our perspective when we’re in uncertain territory. Those who do survive against unbelievable odds bring us all hope, traversing the gauntlet of …
 
This episode features a real-time discussion of what goes into the work of advocating for a childhood cancer license plate. Paul Miller, childhood cancer research advocate from Colorado, has successfully worked at supporting the Colorado plates for childhood cancer. Fabiola Flores, childhood cancer advocate and parent who lost her daughter to DIPG,…
 
This episode highlights H. R. 623, important funding legislation for a crucial program at NIH for childhood disease research. Ellyn Miller, CEO of Smashing Walnuts Foundation, joins us to share the history of this legislation as well as the work today and forward into this new year supporting this and other activity in the childhood cancer advocacy…
 
Paula Carter, founder of the Scott Carter Foundation in Tulsa, OK, joins us with Caitlyn Barrett, National Director of Research and Programs for CureSearch, to discuss their collaboration in supporting a new clinical trial for DIPG. The Scott Carter Foundation has been supporting childhood cancer research for three decades in honor of Scott Carter …
 
Catharine Young, Executive Director of the Shepherd Foundation (Alexandria, VA) visits with us to give history and background to the Cancer Patient Equity Act of 2021, H. R. 5377, newly introduced to the US House of Representatives. With a focus on equity for patients with rare cancers, which comprise a whopping 95% of cancer diagnoses in the Unite…
 
Dr. Burzynski’s cancer research and patient care has been inspired by the philosophy of the physician Hippocrates: ‘First, do no harm’. The Burzynski Clinic (Houston, TX) approach to treatment is ‘personalized’ in an attempt to maximize effectiveness and minimize side effects for each cancer patient. However the success of his specialized treatment…
 
On July 6, 2008, the lives of Dena and Billy Sherwood changed forever when their then 13-month-old son, Billy Jr., was diagnosed with Neuroblastoma, a very aggressive cancer of the sympathetic nervous system that most commonly occurs in infants and children under the age of five. In August of 2009, in the midst of their son’s aggressive treatment, …
 
1Voice Foundation, based in Brandon, Florida has been innovating and implementing helpful programs for children with cancer for over 2 decades. We have the unique opportunity to hear from Founder and CEO Mary Ann Massolio, who shares with us her dedication, from her own tragic loss, to serving the childhood cancer community and research community w…
 
Kristena Kitchen joins us from Maryland and Bryanna's Love Foundation to share her upcoming book launch for "Cotton Candy Clouds" on Thursday, September 9th at 7pm ET Live on Facebook. Kristena's daughter Bryanna tragically lost her life in 2018 to ETP-ALL, a rare type of childhood leukemia for which there are not yet targeted treatments. Bryanna's…
 
Twenty-three year old Tori Moreno is fortunate not to remember too much of her early diagnosis with DIPG, but she remembers enough. Treated at the controversial Burzynski Clinic in Houston, TX, Tori did well on the treatments as an infant, and she is now a long-term survivor of the deadliest pediatric brain cancer. Tori generously discusses with us…
 
Without adequate national awareness of the urgent, unmet needs of children with cancer, the failure of the medical research system to adequately address childhood cancer will continue as progress remains a high-grade uphill battle. Randy Hinton is a childhood cancer advocate from South Carolina, and father to Haley who he lost in the 2000s to DIPG,…
 
On January 4, 2021, 6 year-old Jacob Senediak of Pittsburgh, PA died due to complications from his fight with DIPG, a deadly childhood brain cancer which spares mercilessly few of its victims. His father, Mark Senediak, joins us on Childhood Cancer Talk Radio to begin a discussion about efforts his family and others connected with "Jacob's Fight," …
 
Jessica Elder, LMSW, LCSW-NY has been the Bereavement Program Manager at Children’s Brain Tumor Foundation for 11 years. Originally from Pittsburgh, PA she acquired a Master of Science degree in social work from Columbia University in 2004, and spent 5 years working as a pediatric oncology social worker in an NYC Hospital. She then earned a post gr…
 
Retired SFPD Police Captain Rick Schiff joins us to share his experience in the mid 1990s with his daughter Chrissy who was diagnosed with a rare and deadly form of brain cancer. Since losing her to the effects of her original lethal-dose conventional treatments, he has tirelessly advocated for patients seeking treatment at the Burzynksi clinic in …
 
Today we hear from two strong, resilient, beautiful women who have beat the odds for a childhood brain cancer that normally proves to be inescapable and merciless. Jessica Ressel-Doeden from St. Louis Missouri here in the USA, and Celeste Sabagh in Cordoba Argentina have not only DIPG in common as long-term survivors, but a success with treatment f…
 
Today's show features interviews with Tammi Carr and Jenny Mosier, leaders of their respective foundations, Chadtough, in Ann Arbor Michigan and Michael Mosier Defeat DIPG Foundation in Bethesda Maryland, recently merged into the ChadTough Defeat DIPG Foundation. Each foundation leader has trailblazed on her own, and in collaboration with others, r…
 
After losing his precious son Talin to brain cancer, Gerry Tye of Sydney, Australia took a leadership role in creating support and networking for the childhood cancer community, specifically for DIPG and childhood brain cancer during a critical period of growth between 2012 and present. Founder of the DIPG Research Group and administrator for DIPG …
 
Mariah Olson was diagnosed in 1980 with neuroblastoma at the age of one year, and is a living testament as a survivor to the difficulties that so many children with cancer endure as a result of toxic, out-dated treatments they receive. She also attests to the pycho-social challenges of growing up with severe medical issues which affect children wit…
 
Mina Carroll with the Storm the Heavens Fund literally coined the “We Must Do Better” phrase, for children with cancer, in confronting the terrible reality in our society today that children are for all practical purposes neglected for research funding by the system in place. Mina's beautiful daughter Philomena was afflicted with DIPG, the killer c…
 
There is a special subtype of neuroblastoma seen in very young children, with spread of disease throughout the body, but which needs a very different approach to treatment compared to older children with metastatic disease. This episode explains the features of this stage MS neuroblastoma, the early problems, and the treatment used. Link to Patreon…
 
PNOC Foundation Administrators Allyn Campbell and Rachael Cassells join us to discuss the May 1 DIPG/DMG webinar and how people can register at www.PNOCF.events, and other upcoming webinars for the special month of May. For Brain Tumor Awareness Month, we share childhood brain cancer statistics and facts, and why awareness for childhood brain cance…
 
If I can be so bold....I wonder if you all might do me a favour, and sponsor my boss for about $1 in a big fundraising walk he is doing. Just a token amount, unless you own oil wells. (One cent will do, if the system allows it!) This might show my hospital administrators that the podcast has an audience who follow it. This episode explains all, and…
 
Christina Wascher, a long-time childhood cancer advocate, is the President and founder of the All-In-to-Win Foundation based in Miami Florida since 2013. Christina has been a philanthropist and an entrepreneur in US and European project developments for Claridon International since 1982, specializing in start-up projects and bringing them to comple…
 
Mark Levine is one of those special people who are moved from an inner conscience and love for all children. Mark and his wife Debbie live in Stoughton, MA and have two children and two grandchildren. Retired from managing a small business for many years, Mark now devotes his life’s work to advocacy and activism for children afflicted with cancer. …
 
Three experts and current leaders in their respective fields join us today to discuss their involvement with the Childhood Cancer Prevention Initiative, beginning with David Levine, CEO of the American Sustainable Business Council, an organization which recognizes that our current system of capitalism does not work for most Americans, and strives t…
 
A few years ago I described CAR T-cells, but they weren't available for routine use. I now update things, with the very important news about CAR T-cell therapy now becoming available. There is also an interview with Dr Caroline Bateman re this subject in another episode. Link to Patreon See acast.com/privacy for privacy and opt-out information.…
 
Dr. Ray Takigiku (founder and CEO) and Dr. Richard Curry, Medical Affairs Consultant at Bexion Pharmaceuticals discuss BXQ-350 and the 2 phase II adult clinical trials coming up as well as a phase II for a pediatric brain tumor, a potential breakthrough treatment. Additionally, other clinical and non-clinical data suggest BXQ-350 has activity in CN…
 
This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years, between parents of children afflicted with brain cancer. For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood cancer community spans…
 
A number of countries have research studies where childhood cancers are analysed in great detail, testing all the DNA in something called 'molecular profiling'. The national Australian study of this is called PRISM, and it is a very exciting project. This episode explains a molecular profiling project and covers issues of obtaining informed consent…
 
The MEK inhibitors are a newer class of drug, and include trametinib, selumetinib and others. They have an important role in paediatric oncology, particularly in glioma treatment and in neurofibromatosis. Link to Patreon See acast.com/privacy for privacy and opt-out information.Door Dr Geoff
 
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 childho…
 
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…
 
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 inf…
 
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 aw…
 
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 n…
 
"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 …
 
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. Howar…
 
CAR T-cell therapy is an exciting new treatment for acute leukaemia. In this episode, Dr Geoff interviews his colleague Dr Caroline Bateman about CAR T-cells and introducing the treatment option to her unit. Link to Patreon See acast.com/privacy for privacy and opt-out information.Door Dr Geoff
 
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, Anthon…
 
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 …
 
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 natur…
 
Candice Hamman and Carl Jansen VanVuuren tell the story of their son Owen who was diagnosed in June 2020 with DIPG, diffuse intrinsic pontine glioma. There are no treatment options besides the standard radiation and palliative care, and purchase of the experimental ONC201 from Germany. Candice and Carl share from the heart what it's like to feel he…
 
The Shepherd Foundation is working with Congress to introduce a bill to position the rare cancer community for better outcomes. Founder and rare cancer patient David Hysong and CEO Catharine Young join us to discuss the recent virtual briefing with Congressman G.K.Butterfield (NC-1) and Gus Bilirakis (FL-12), Greg Simon, former Director of the Canc…
 
Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her "gift from God." She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Moebius Syndrome. Though one required surgery as an infant, Juliette had a happy, healthy childhood and social life. She was diagn…
 
Childhood Cancer Talk Radio has the privilege of sharing with our listeners a window into the lives of three families facing a similar challenge: a child diagnosed with DIPG. At varying places in the journey, David Turner Jr., and Jayce Diaz, and Ryan Agnew, father to Aspen (4) share the realities of their lives. David Jr. has become an advocate fo…
 
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