Podcasts about dipg

In this episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by Hide Harashima, dad, advocate, and founder and president of Love4Lucas Foundation. He discusses creating the Love4Lucas Foundation in honor of his son Lucas, who was diagnosed with diffuse intrinsic pontine glioma (DIPG). Dr. Peters is then joined by Dr. Paul Fisher, Professor of Neurology and Pediatrics, and by courtesy, Neurosurgery and Epidemiology and Population Health, Beirne Family Professor of Pediatric Neuro-Oncology, Dunlevie Family University Fellow in Undergraduate Education at Stanford University, and Editor-in-Chief of The Journal of Pediatrics. Dr. Fisher explains DIPG and other similar cancers, discusses treatment options, and what new research is being done today.   Additional Resources Love4Lucas Patients and Their Loved Ones Find New Roles as Advocates After Diagnoses Lawyer and Model Who Survived Brain Tumors Focuses on Giving Back   Other Brain & Life Podcast Episodes Actor Craig Russell on Staying Positive during his Brain Tumor Diagnosis Lawyer, Model Victoria Vesce Uses Her Platform for Brain Tumor Advocacy BMX Athlete Josh Perry's Perseverance Living with Brain Tumors We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media: Hide Harashima @love4lucasfoundation; Dr. Paul Fisher @stanfordchildrens Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

This week, I sit down with Alan and Eimear Durnan to talk about their beautiful daughter, Keeley Duggan, who they heartbreakingly lost in July 2023. Keeley was diagnosed with DIPG, a rare and aggressive brain tumour. Alan and Eimear speak openly about the long road to her diagnosis, her incredible strength throughout her illness, and the deep grief they now live with. In her memory, they've set up the Keeley D Foundation, a charity that offers practical support to children on palliative care and their families. Their story is one of love, heartbreak, and the unbreakable bond of family. Instagram @Keeleydfoundation@griefirelandFor more information on Grief Retreats visit griefireland.com

Sometimes, the hardest thing we'll ever do is face our own reflection and embrace who we truly are. Ginger Bliss takes us on a powerful journey of self-compassion, transformation, and breaking the cycle of self-doubt. She opens up about confronting buried pain, shifting from self-loathing to self-love, and discovering that true freedom comes from facing what scares us most. Through her story, we're reminded that pain is inevitable—but suffering in silence doesn't have to be. With wisdom, courage, and a heart full of hope, Ginger shows us that when we stop pretending and start reflecting, we unlock the path to a more authentic, fulfilling life. Key Takeaways: Avoiding pain doesn't make it disappear—it seeps into behaviors and relationships. Facing it head-on allows for healing and personal growth. Practicing self-compassion helps you embrace your worth, let go of perfectionism, and build deeper connections with others. Other people's words and actions are a reflection of them, not you. Releasing self-blame can bring more peace and confidence. Small, intentional steps like journaling, listening to inspiring content, or following uplifting voices can lead to powerful mindset shifts. Growth may change your relationships, but by living authentically, you'll attract the right people who support your journey.   About Ginger Bliss: Ginger L. Bliss is an accomplished executive leader with over two decades of experience developing staff and leaders, driving operational improvements, guiding strategic planning and business development within healthcare and corporate environments. With a proven track record in leadership, operations, marketing, communications, and organizational efficiency, Ginger has a unique ability to identify opportunities for growth, anticipate challenges, and develop solutions that enhance human behavior leading to increased engagement and satisfaction both personally and professionally, as well as organizational performance.  Ginger is also the author and publisher of Brave Enough To Be Bliss, a memoir that delves into the power of self-reflection in overcoming fear and control within relationships. She launched her book in 2024 at the BrainStorm Summit in Washington, D.C., where she spoke to grieving parents and physicians working to find a cure for terminal pediatric brain cancers DIPG and DMG. As the founder of GB Real Life & Leadership Strategies, Ginger provides tailored life and leadership coaching services that deliver strategic guidance and actionable plans with measurable outcomes. She works with adults of all ages, as well as emerging and executive leaders. Drawing on her deep and broad knowledge of human behavior, gained through years of professional experiences and personal healing, Ginger guides struggling humans and business leaders toward creating their own long-term fulfillment and success. Ginger's expertise extends to operational enhancements having spearheaded transformative projects such as facility expansions and greenfield development, joint ventures, partnerships and mergers, process optimization, and relationship management. She has also successfully overseen multimillion-dollar budgets, and streamlined a variety of individual and organizational processes, consistently improving efficiency, accuracy, and cost savings. Throughout her career, Ginger has held executive leadership roles, including Chief Operating Officer at Midwest Aortic & Vascular Institute, Vice President of Strategic Planning and Business Development at Carondelet Health, and Vice President of Marketing, Planning, and Business Development at Shawnee Mission Medical Center, among others. Her leadership in these organizations led to significant operational improvements, increased market share, and enhanced organizational performance. She maintains relationships with colleagues and vendors from every organization throughout her distinguished career because her primary concern and investment has always been with the people who cross her path.  Ginger earned a master's degree in health services management from Webster University and a bachelor's degree in journalism/mass communication from Kansas State University. She has been recognized for her leadership with inclusion in Ingram's Magazine 40 Under 40 Leaders and has actively contributed to many community organizations, including the serving as a board member for the HeadsUp Foundation for PCS, Metropolitan Organization to Counter Sexual Assault, Spofford Home for Children, and the Leawood Chamber of Commerce. https://www.gingerbliss.life @ginger_l_bliss linkedin.com/in/gingerbliss   Connect with Dr. Michelle and Bayleigh at: https://smallchangesbigshifts.com hello@smallchangesbigshifts.com https://www.linkedin.com/company/smallchangesbigshifts https://www.facebook.com/SmallChangesBigShifts https://www.instagram.com/smallchangesbigshiftsco   Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app. Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.

In the final part of Theo's story, Allie and Mike share the magic of hearing their son speak again, after four months of silence. They reflect on a beautiful and intense summer - the elated highs and the gutting lows, before recounting their final weeks with Theo, when his tumor began to progress and eventually took his life. SUNSET is part 3 of a 3 part series. This episode contains details about the death of a child - take care of yourself while listening.Show credits:Written, produced and edited by Allie and Mike Kramer.Music by Mike Kramer, Duncan Thum and Tyler Sabbag.To join us in the fight against DIPG, visit ThriveLikeTheo.com.Get in touch: contact@worstclubeverpodcast.comInstagram: @worstclubeverpodcast

Today's episode is a continuation of my conversation with Shawn and Sandy Smith about their son Andrew—a joy-filled boy with a love for music—who went to heaven in 2009 after a courageous battle with DIPG. Today, we look at what life has been like over the sixteen years since Andrew went home to Jesus.  In this episode, Shawn and Sandy open up about how they've learned to carry their loss, what has brought them comfort, and how their faith has deepened in ways they never expected.We'll talk about the struggles and the hope, the moments that still take them by surprise, and the ways God has shown His love and faithfulness through the years. I believe today's episode will be an encouragement to you.I would love to hear your thoughts on the show. Click here to send me a message!** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry. We'd love for you to connect with us here at While We're Waiting! Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parentsClick HERE to learn more about our network of While We're Waiting support groups all across the country. Click HERE to subscribe to our YouTube channelClick HERE to follow our public Facebook pageClick HERE to follow us on Instagram Click HERE to follow us on Twitter Click HERE to make a tax-deductible donation to the While We're Waiting ministryContact Jill by email at: jill@whilewerewaiting.org

In Part 2 of Theo's story, Allie and Mike describe hearing the news of their son's terminal cancer diagnosis, and chronicle the first four months that followed. They share their journey through radiation, treatment planning, and trying to bring Theo the most magical experiences possible amidst the chaos of cancer. ECLIPSE is part 2 of a 3 part series. This episode contains descriptions of pain, suffering, and medical trauma, and may be inappropriate for some listeners. To donate to DIPG research in Theo's name, visit ThriveLikeTheo.com.Show credits:Written, produced and edited by Allie and Mike Kramer.Music by Mike Kramer, with additional music from Duncan Thum and Tyler Sabbag.Get in touch: contact@worstclubeverpodcast.comInstagram: @worstclubeverpodcast

Joining me today are Shawn and Sandy Smith, who I had the opportunity to meet when they attended our first While We're Waiting Weekend in Michigan a couple years ago.  Their faith has been tested in ways most of us can hardly imagine—first, when Sandy was diagnosed with breast cancer, and then, just days later, when their six-year-old son Andrew was diagnosed with DIPG, an aggressive and terminal form of brain cancer. Through every challenge, every difficult conversation, and every painful moment, Shawn and Sandy clung to their faith, trusting that God had a purpose even in their suffering. In this episode, they share how they walked through this unimaginable season with hope, how Andrew's childlike faith and joy reflected the goodness of God, and how they found peace in His promises—even when healing on this earth was not part of His plan. Their story is one of deep sorrow but also incredible trust in God's sovereignty—a story of holding fast to His Word, even when the path ahead seemed impossible. If you've ever wrestled with faith in the face of suffering, this conversation will remind you that God has not forgotten you.  Be sure and come back next week to hear more of their story!  I would love to hear your thoughts on the show. Click here to send me a message!** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry. We'd love for you to connect with us here at While We're Waiting! Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parentsClick HERE to learn more about our network of While We're Waiting support groups all across the country. Click HERE to subscribe to our YouTube channelClick HERE to follow our public Facebook pageClick HERE to follow us on Instagram Click HERE to follow us on Twitter Click HERE to make a tax-deductible donation to the While We're Waiting ministryContact Jill by email at: jill@whilewerewaiting.org

In the very first episode of Worst Club Ever, host Allie Kramer and her husband Mike begin to tell the story of the life and death of their four-year-old son, Theo. In Part 1, Allie and Mike share what their lives were like with Theo from his birth, up until his devastating brain cancer diagnosis at age three. SUNRISE is part 1 of a 3 part series. This episode is highly emotional and may be inappropriate for some listeners. To donate to DIPG research in Theo's name, visit ThriveLikeTheo.com.Show credits:Written, produced and edited by Allie and Mike Kramer.Music by Mike Kramer, with additional music from Duncan Thum and Tyler Sabbag.Get in touch: contact@worstclubeverpodcast.comInstagram: @worstclubeverpodcast

Abigail Derr from Young Lives v Cancer sits down with Jamie and Ellie Thompson to share their heart-wrenching yet powerful story, Billy the Brave: A Family Fight Against DIPG. In this episode, Jamie and Ellie open up about their son Billy's diagnosis with DIPG, a terminal brain cancer, and the five-month battle that followed. Billy The Brave: A Family's Fight Against DIPG They discuss the first symptoms that raised alarm, the pivotal moment that took them to A&E on 7th November 2023, and the shattering reality of being told their son wouldn't survive. Together, they reflect on the challenges of radiotherapy, the emotional toll of steroids, and how they clung to hope amidst devastating blows. This is a conversation about resilience, love, and raising awareness of DIPG—a fatal disease that's poorly understood, underfunded and under-researched. Join us as we honour Billy the Brave and the Thompsons' fight to make a difference as they launch Billy's Battalion and plan for their next fundraising event, Billy's Bash: A Family Funday. To donate to Billy's Battalion, part of Abbie's Army, please click here.  Follow Ellie & Jamie on Instagram and Facebook.  Show notes Email us at info@mybaba.com Follow us on Instagram @mybabainsta and @mybabagram What is My Baba? My Baba provides the daily scoop on family, food and lifestyle - we're not just experts at all things parenting. Visit mybaba.com  The Content on this podcast is provided by My Baba and represents our sole opinions and views. For more information on our terms and conditions please refer to the website: https://www.mybaba.com/terms-conditions/

Tara and Jonathan Sharpe will talk about their decision not to seek treatment for their 5 year old daughter Lydia who was diagnosed with DIPG on August 7th of 2021. They decided that rather then put Lydia through radiation and possible clinical trials which they knew would not ultimately cure her,  they wanted to make Lydia as happy and comfortable as possible during her final days, as the only thing she wanted to do was to go home and play as long as possible with her 7 year old sister Madeline.

Hopefully for the 1ST and LAST time, I spoke with a mom and dad who had what I am calling a misfortune on Steroids when Tanya and Luke Palmowski's son Tyler was diagnosed with Medulloblastoma when he was 8 years old in 2015, was able to ring the bell at Stollery Children's Hospital in Edmonton, Albert 1 year later in 2016, and then just as Covid was hitting in March of 2020 was diagnosed with DIPG. Tyler passed away on November 24th of 2020 .

Brandon and Amanda Huffman's daughter Avery complained of double vision and then her right eye became introverted in June of 2015, and after 2 visits to a Pediatric Opthamologist, she was diagnosed with DIPG. Avery's battle with this form of Pediatric Brain Cancer lasted only 7 1/2 months before her passing on February 16th of 2016, and she was even denied the Honeymoon period that many DIPG sufferers get to experience. 

11 year old Noah Klein began having trouble with his motor skills as well as fatigue in January of 2022 and quickly was diagnosed with DIPG. Noah was able to feel well enough by May of that year to attend a Miami Heat playoff game and to meet Jimmy Butler who was their star player. His mom Elan talks about what Noah went through which included a honeymoon period that summer where Noah was able to travel with his family and was feeling good until the fall season when his condition began to deteriorate, and led to his passing on February 17th of 2023 when he was 12 1/2 years old. 

Sil Lutkiwitte is the Chief Executive Officer and Randy Schrecengost is the Chief Scientific Officer for Targepeutics, and their company has created a protein known as GB-13 which is targeted to help in the fight against DIPG and DMG. This protein is designed to kill off bad brain cells while completely avoiding good brain cells and they are hoping to get the necessary financing to be able to bring this protein to Clinical Trial in the near future. 

Even at the age of 7 Eric Buther's son Santiago was a graceful athlete but then he became clumsy and also was feeling tired and lethargic before he was diagnosed with DIPG in 2018. Santiago was able to go through an extended "Honeymoon" period after being treated at St Jude Children's Research Hospital but then he relapsed and after a stay at Cincinnati Children's Hospital he passed away on January 17th of 2020, while in 3rd grade. 

Join Joann and Allison interview Jenica with Dahlias 4 DIPG. Following the loss of their son, Levi, Jenica and her family started this dahlia business as a way to raise funds and awarness for childhood cancer. Come listen to all the awesome things they are doing for families walking through the same journey.  You can reach out to the Levi's Legacy team and find out more about Dahlias 4 DIPG on Facebook. Find the Dahlias 4 DIPG page or the Levi's Legacy DIPG Foundation page. Their tubers will go for sale in spring at https://dahlias-4-dipg.myshopify.com/password. Also, follow their facebook page for dahlia auctions. 

Becky Handley overheard her 12 year old daughter talk about having double vision to her ballet teacher in September of 2020 after complaining of headaches in the preceding days. The next day which was September 20th, Ava was diagnosed with DIPG. Ava did experience a six month honeymoon period from January of 2021 through July of 2021 but eventually her condition deteriorated and she passed away from this terrible form of Pediatric Brian cancer on June 15th of 2022.

Jamie Buckner's beloved nephew Kyler passed away on March 2nd of 2021 after enduring a 16 month battle with the Pediatric Brian Cancer DIPG. Jamie is a filmmaker and he is currently working on a Documentary film which highlights Kyler's brain cancer fight. Jamie hopes to have this film completed in early 2025 and his initial marketing plans include having it shown at well known film festivals, and eventually having it shown at the White House to help raise awareness for this most dreaded form of Pediatric Brain Cancer 

Join us this week as we talk to Jaden McDuffie and Fiona Godwin. Jaden gives us the scoop following the win Friday night vs Severna Park and walks us through his three big touchdown catches from quarterback Finn Mulvilhill.Plus we sit down with Fiona Godwin. Her organization, Lace 'em up for Libby, raises funds to contribute to organizations that fight childhood cancer, especially the one that took her daughter, Libby, at far too young of an age. Join Fiona and many of our South River sports teams at the 6th Annual Mr. Ted's Relay on Saturday, September 21st from 7:00am to 3:00pm at Davidsonville Park. Learn more about this wonderful event at https://www.laceemupforlibby.org/6th-annual-mr-teds-relay/All proceeds will go toward the Alex's Lemonade Stand Foundation's “The Million Mile" fundraiser to support the Hopkins Brain & Eye Tumor Laboratory, the lab that's still working with Libby's cells to find new therapies for DIPG and other forms of childhood cancer.Hawk Talk is hosted by Tom Frank and brought to you by Chad's BBQ, Merrick Creative, and Maryland Remodeling Expert. Don't hesitate to contact us through Instagram @SRHawkTalk or by email at SRHawkTalk@gmail.com. We want to report on all sports and all the great stories happening throughout the season. Please reach out, send updates after games, let me know about fundraisers, big games, etc. This show is only as good as what we know. So get involved! Subscribe, Listen and Share the show on Apple, Spotify or wherever you listen to podcasts, leave us a rating on Apple, help support the show at https://srhawktalk.buzzsprout.com, and spread the word Seahawk Nation. #WERSRSupport the show

Send us a message! We love hearing from our listeners.In this episode, we delve deep into the heart-wrenching story of Casey, a devoted mother who navigated the nearly impossible journey of losing her young daughter, Zoe, to childhood cancer. Zoe, who battled the disease from the tender age of three, tragically passed away at just five years old on July 4, 2018, leaving behind a legacy of love and resilience that Casey warmly recounts.Casey chronicles the events leading to Zoe's diagnosis, detailing how a seemingly innocent fall at the park quickly spiraled into a devastating medical discovery. She describes the emotional roller coaster of hospital stays, the endless tests, and the gut-wrenching moment when they were told Zoe had an inoperable brain tumor – initially misidentified, but later confirmed as DIPG, a fatal pediatric brain cancer.Throughout the episode, listeners are invited into Casey's world of unimaginable grief, tough decisions, and small victories amid a backdrop of profound love and hope. Casey reflects on the life transitions and emotional shutdown she experienced post-divorce and during the COVID-19 pandemic, candidly sharing her journey towards therapy and emotional healing, including exploring specialized treatments like EMDR.A significant part of the conversation is dedicated to keeping Zoe's memory alive through outdoor activities, charitable initiatives, and vivid recollections of happier times, like Zoe's lively playhouses and her favorite holidays. Casey's charity work stands as a testament to her enduring connection with Zoe, providing joy to families of children with terminal illnesses.In a deeply moving recount of Zoe's final days, Casey touches on the emotional complexities of watching her daughter slip away, the support from family and friends, and the pivotal decisions made in solace and desperation. With raw authenticity, she talks about the long-term impact of grief, how she coped through organizing and cleaning, and the crucial role her dog Juno played in helping her through the darkest times.Casey's vulnerable storytelling offers a beacon of hope for anyone facing similar trials, as she shares her continued efforts to find joy and reengage with life after loss. Join us for this emotional and inspiring episode as we honor Zoe's memory and Casey's unyielding strength and dedication to her daughter's legacy.Support the showFor more, go to thedayafter.com, or join the conversation online and follow us @thedayafteronline. You can find our hosts at: @cjinfantino @ashleyinfantinoMusic by Servidio Music

Seahawk Nation, we officially kicked things off this past week with the start of the regular season for our Fall Sports. Join host, Tom Frank, as he runs through last week's results and looks ahead to all our upcoming games for Boys and Girls Soccer, Volleyball, Field Hockey, Golf, Cross Country and Football.Plus we have 3rd year Varsity Girl's Soccer Coach, Christine Flanagan, back for her 3rd time on the podcast. She provides great insight on this year's team and coaches, the keys to a successful season and who we need to beat in the county. And lastly discover more on the 6th Annual Mr. Ted's Relay! Mr. Ted and Ms.Snow are ready for another showdown! For those not in the know, Mr. Ted and Ms. Snow like to compete to see who can complete the most miles around Davidsonville Park every year...but being teddy bears they need your help!The race is Saturday, September 21, 2024 from 7:00 a.m. - 3:00 p.m. (you pick your time) at Davidsonville Park. For more information fo to https://www.laceemupforlibby.org/6th-annual-mr-teds-relay/All proceeds will go toward the Alex's Lemonade Stand Foundation's “The Million Mile" fundraiser to support the Hopkins Brain & Eye Tumor Laboratory, the lab that's still working with Libby's cells to find new therapies for DIPG and other forms of childhood cancer. Hawk Talk is hosted by Tom Frank and brought to you by Chad's BBQ, Merrick Creative, and Maryland Remodeling Expert. Don't hesitate to contact us through Instagram @SRHawkTalk or by email at SRHawkTalk@gmail.com. We want to report on all sports and all the great stories happening throughout the season. Please reach out, send updates after games, let me know about fundraisers, big games, etc. This show is only as good as what we know. So get involved! Subscribe, Listen and Share the show on Apple, Spotify or wherever you listen to podcasts, leave us a rating on Apple, help support the show at https://srhawktalk.buzzsprout.com, and spread the word Seahawk Nation. #WERSRSupport the show

For Our Children: Warrior Parenting Guest Janet Demeter, Founder of Jack's Angels Foundation and Host of Childhood Cancer Talk Radio Fifty percent of children in the U.S. have chronic health issues, and among these, cancer is the leading cause of death among children by disease. Underlying this diseased state of our children are environmental toxins, which enter a body and accumulate over time to create metabolic deficiencies and imbalances. Such toxins exist in our air, water, soil and food. Parents are stepping up to identify these problems, raise awareness and advocate for systemic change. They are doing so in many different capacities; some are focusing on prevention and others are searching for therapies that are better than “standard of care” - less toxic, safer and more effective. In this episode, Janet Demeter shares her son's brain cancer story and the leadership role she took on within the childhood cancer community after losing Jack in 2012. Janet has learned a lot about cancer research, the shortcomings of the pediatric cancer care system and government policy, as well as what we need to do to be more effective. Janet is the founder of Jack's Angels Foundation, host of Childhood Cancer Talk Radio and a lead advocate for pediatric cancer awareness. She one of many parents who have been creating greater visibility and encouraging a higher level of funding for research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general. Janet leads the effort to pass a resolution designating the 17th day in May as ‘‘DIPG Awareness Day,'' which cites DIPG as the most compelling example of pediatric cancer. This September 2024 interview coincides with Childhood Cancer Awareness Month, CureFest 2024, a new book release, DIPG: Eternal Hope Versus Terminal Corruption, and the heightened focus on children's chronic health trends happening in national politics. The DIPG book is an experiential narrative published by Dean and Wendy Fachon about their son's cancer journey, and below is a link to a must-see video interview with the Fachons – “What is DIPG?” LISTEN TO PARENTS SPEAK ABOUT OUR CHILDREN'S HEALTH Childhood Cancer Talk Radio with Janet Demeter https://toginet.com/shows/childhoodcancertalkradio What is DIPG? With Dean and Wendy Fachon https://live.childrenshealthdefense.org/chd-tv/shows/good-morning-chd/what-is-dipg/ What is Bioethics? with Rachael McIntosh https://dreamvisions7radio.com/what-is-bioethics/ Why Eating Organic is Crucial to the Future of the Planet? With Zen Honeycutt https://dreamvisions7radio.com/eating-organic-crucial-future-planet/ Environmentally-Safe Technology with Cecelia Doucette https://dreamvisions7radio.com/environmentally-safe-technology-part-3/   READ LEGISLATIVE INITIATIVES FOR CHILDHOOD CANCER 118th CONGRESS (2023-2024) H.RES 416 – Designating the 17th day in May as ‘‘DIPG Awareness Day'' Letter to Congress and Text of Resolution https://www.govtrack.us/congress/bills/118/hres416/text Fairness to Kids with Cancer Act of 2023 https://www.congress.gov/bill/118th-congress/house-bill/5405/text Gabriella Kids First Research Act 2.0 https://www.congress.gov/bill/118th-congress/house-bill/3391/text   LEARN ABOUT CHILDHOOD CANCER ORGANIZATIONS CREATED BY PARENTS Jack's Angels Foundation (Janet Demeter) https://jacksangelsfoundation.com/?page_id=3305 Smashing Walnuts: Cracking the Cure for Childhood Cancer (Ellyn Miller) https://smashingwalnuts.org/ The Cure Starts Now (Brooke and Keith Dessrich) https://www.thecurestartsnow.org/ … and there are many, many more. Learn more at https://netwalkri.com email wendy@netwalkri.com or call 401 529-6830. Connect with Wendy to order copies of Fiddlesticks, The Angel Heart or Storywalker Wild Plant Magic Cards. Subscribe to Wendy's blog Writing with Wendy at www.wendyfachon.blog. Join Wendy on facebook at www.facebook.com/groups/StoryWalkingRadio

The Mariners have the day off and a much-needed homestand. Plus, it's EQC Note Thursday! Brandon Huffman, 247 Sports joins Ian to talk about the loss of his daughter Avery to DIPG. The community continues to rally around his family. He also gives us the latest look on local recruiting and assesses the difference on what's happening with the Cougs versus the Huskies. He tips his hat to Jake Dickert and the job he's done. Mayor of Maple Valley update and even though the Mariners are off tonight, there is some scoreboard watching to do. Corbin Smith, Locked on Seahawks joins Ian to discuss what the Ryan Grubb offense looks like with the Seahawks. He's extremely encouraged by what he's seen in the off-season from Abe Lucas and changed his mind as to whether or not he'd be ready for preseason. BOLD PREDICTION: Corbin says Jaxon Smith Njigba will have the most receptions for Seattle this year. Ian is intrigued by Corbin's assessment of where JSN should be in receptions this year. Certain guys have the ability to be gamechangers this year. Plus a quick update on the NBA Draft. Sports are becoming less accessible by the day when it comes to TV, and now we have another potential roadblock. We also listen to Jordan Morris, who explained why he'd so passionate about his foundation. Ian discusses why it's so important to him, personally.Anne McCoy, Washington State Athletic Director joins Ian to talk about that interim tag being removed and officially be named WSU's new AD. She discusses what the restructure looks like in administration and Washington State and how great the Cougar spirit has been through all of the changes.

Diffuse intrinsic pontine glioma, known as DIPG, is a rare and aggressive type of pediatric cancer that forms in the brainstem, resulting in approximately 200 to 300 new cases in the United States each year. Fortunately, investigators at Lurie Children's Hospital are paving the way to breakthrough treatment for children with DIPG. In this episode, Lurie Children's physicians Dr. Ashley Plant-Fox and Dr. Michael DeCuypere discuss the progress of this first-of-its-kind, phase 1 clinical trial for DIPG that has been open since January of 2022 and offers hope for a disease that currently has no curative options.  

Chris Crawford and Nathan Bishop join Ian LIVE from Snoqualmie Casino as we have a very special Mollywhop Friday! Heidi Watney, Apple TV is on the call for the Mariners game tonight and joins the guys to give an overview of the series with the Angels and just what the AL West looks like this year. She takes a deep dive into the Mariners and where they stand right now. We also learn more about the rest of the MLB headlines.John Forslund, NHL Play by Play Announcer is on the call tonight for the Stanley Cup Playoff game between the Oilers and Stars in Dallas and gives us a solid preview of the matchup. Plus, what are the Kraken getting in Dan Bylsma? Mollywhop Friday! Nathan Bishop and Chris Crawford are live with Ian from the Snoqualmie Casino and we get into an official WHOP! The Mariners took three of four from the Astros over the weekend and sit 3 games atop of the AL West, but can they sustain it? The watchability of the team comes into discussion. Chris likes the way Servais has been handling his pitching staff. What would the Mariners need to give up to truly improve this roster, and would it be worth it? What do you make of Julio Rodriguez's numbers right now? FRIENDS OF FURNESS FRIDAY! Brandon Huffman, 247Sports.com joins us to talk about his foundation in honor of his daughter, which focuses on fighting DIPG. They've raised over $1 million that has gone to help throughout the country. Ian's golf tournament directly supports this as well. Brandon gives us the latest news in the world of football recruiting and transfer portal.

Join Stephen Napleton and Father Tom Hurley on the Steve Cochran Show as they share the powerful journey of Violet, Stephen's 3-year-old daughter who lost her life in February 2022 to a form of brain cancer called Diffuse Intrinsic Pontine Glioma, or DIPG. They delve into Violet's story, the inspiration behind creating The Violet Foundation, and how to maintain faith in the face of adversity. For additional details, please visit https://www.violet-foundation.org/See omnystudio.com/listener for privacy information.

DIPG: Eternal Hope versus Terminal Corruption Guests: Dean Fachon, author with wife Wendy Fachon Neil Fachon was a 19-year-old engineering-student at Northeastern University when he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain stem cancer. His family was with him at Mass General Hospital when the neuro-oncologist said he had three months to live. “Six, if you start radiation.” With no time to lose, the family searched out every conceivable treatment, as quickly as possible. Neil chose to enroll in a clinical trial at the Burzynski Clinic in Houston. Though dogged by controversy throughout his career, Dr. Stanislaw Burzynski has achieved miraculous results treating many patients with “incurable” cancers, including some with DIPG. The medical system designed to protect patients like Neil instead proved as intractable as the disease in his brain. DIPG: Eternal Hope versus Terminal Corruption is the first book of a trilogy, covering the time from misdiagnoses to diagnosis, and from choosing and commencing treatment to being denied treatment. Through a long series of moves and counter moves, Neil was caught in the middle of a life and death chess game, against an opponent that was less than above board. This book is dedicated to everyone who feels abandoned by the very institutions we believed were established to safe guard our rights. Dean Fachon is publishing his son's story to commemorate Brain Tumor Awareness Month (May) and DIPG Awareness Day, which is May 17. Dean Fachon has a Bachelors Degree in English Literature from Colgate University and a Masters Degree in Technical Communication from Rensselaer Polytechnic Institute. He wrote technical publications for IBM and DEC, and is the author of Grand Illusion a treatise on fiat money. Dean's wife, Wendy,, is a writer for Natural Awakenings magazine, a contributing author of Shining a Light on Grief, Volume 2, author of The Difference Maker, and host of the Story Walking Radio Hour here on D7RN. DIPG: Eternal Hope versus Terminal Corruption DIPG, by author Dean Fachon is the 1st book of a trilogy, covering the time from misdiagnoses to diagnosis, and from choosing and commencing treatment to being denied treatment. Through a long series of moves and counter moves Neil, Dean's son was caught in the middle of a life and death chess game…https://dipgbook.com/ Call In and Chat with Deborah during Live Show: 833-220-1200 or 319-527-2638 Learn more about Deborah here:  www.lovebyintuition.com

Transcript with audio and relevant external links, recorded on 6 Feb 2024Eric Topol (00:05):Hello, this is Eric Topol with Ground Truths, and I have a remarkable guest with me today, Professor Michelle Monje, who is from Stanford, a physician-scientist there and is really a leader in neuro-oncology, the big field of cancer neuroscience, neuroinflammation, and she has just been rocking it recently with major papers on these fields, no less her work that's been on a particular cancer, brain cancer in kids that we'll talk about. I just want to give you a bit of background about Michelle. She is a National Academy of Medicine member, no less actually a National Academy of Medicine awardee with the French Academy for the Richard Lounsbery Award, which is incredibly prestigious. She received a Genius grant from the MacArthur Foundation and is a Howard Hughes Medical Institute (HHMI) scholar, so she is just an amazing person who I'm meeting for the first time. Michelle, welcome.Michelle Monje (01:16):Thank you. So nice to join you.Long Covid and the BrainEric Topol (01:18):Well, I just am blown away by the work that you and your colleagues have been doing and it transcends many different areas that are of utmost importance. Maybe we can start with Long Covid because that's obviously such a big area. Not only have you done work on that, but you published an amazing review with Akiko Iwasaki, a friend of mine, that really went through all the features of Long Covid. Can you summarize your thoughts about that?Michelle Monje (01:49):Yeah, and specifically we focused on the neurobiology of Long Covid focusing on the really common syndrome of cognitive impairment so-called brain fog after Covid even after relatively mild Covid. There has been this, I think really important and exciting, really explosion of work in the last few years internationally trying to understand this in ways that I am hopeful will be beneficial to many other diseases of cognition that occur in the context of other kinds of infections and other kinds of immune challenges. But what is emerging from our work and from others is that inflammation, even if it doesn't directly initially involve the nervous system, can very profoundly affect the nervous system and the mechanisms by which that can happen are diverse. One common mechanism appears to be immune challenge induced reactivity of an innate immune cell in the nervous system called microglia. These microglia, they populate the nervous system very early in embryonic development.(02:58):And their job is to protect the nervous system from infection, but also to respond to other kinds of toxic and infectious and immune challenges. They also play in healthy conditions, really important roles in neurodevelopment and in neuroplasticity and so they're multifaceted cells and this is some population of those cells, particularly in the white matter in the axon tracks that are exquisitely sensitive it seems to various kinds of immune challenges. So even if there's not a direct nervous system insult, they can react and when they react, they stop doing their normal helpful jobs and can dysregulate really important interactions between other kinds of cells in the brain like neurons and support cells for those neurons like oligodendrocytes and astrocytes. One common emerging principle is that microglial reactivity triggered by even relatively mild Covid occurring in the respiratory system, not directly infecting the brain or other kinds of immune challenges can trigger this reactivity of microglia and consequently dysregulate the normal interactions between cells and the brain.(04:13):So important for well-tuned and optimal nervous system function. The end product of that is dysfunction and cognition and kind of a brain fog impairment, attention, memory, ability to multitask, impaired speed of information processing, but there are other ways that Covid can influence the nervous system. Of course there can be direct infection. We don't think that that happens in every case. It may not happen even commonly, but it certainly can happen. There is a clear dysregulation of the vasculature, the immune response, and the reaction to the spike protein of Covid in particular can have very important effects on the vessels in the nervous system and that can trigger a cascade of effects that can cause nervous system dysregulation and may feed directly into that reactivity of the microglia. There also can be reactivation of other infections previous, for example, herpes virus infections. EBV for example, can be reactivated and trigger a new immune challenge in the context of the immune dysregulation that Covid can induce.(05:21):There also can be autoimmunity. There are many, we're learning all the different ways Covid can affect the nervous system, but autoimmunity, there can be mimicry of some of the antigens that Covid presents and unfortunate autoimmunity against nervous system targets. Then finally in severe Covid where there is cardiopulmonary compromise, where there is hypoxia and multi-organ damage, there can be multifaceted effects on the nervous system in severe disease. So many different ways, and probably that is not a comprehensive list. It is certainly not a mutually exclusive list. Many of these interactions can happen at the same time in the same individual and in different combinations but we're beginning to wrap our arms around all the different ways that Covid can influence the nervous system and cause this fairly consistent syndrome of impaired attention, memory, multitasking, and executive functions.Homology with Chemo BrainEric Topol (06:23):Yeah, well there's a lot there that you just summarized and particularly you highlighted the type of glia, the microglia that appear to be potentially central at least a part of the story. You also made analogy to what you've seen with chemotherapy, chemo brain. Maybe you could elaborate on that.Michelle Monje (06:42):Yeah, absolutely. So I've been studying the cognitive impairment that can happen after cancer therapies including chemotherapy, but also radiation and immunotherapy. Each time we develop a new model and dig in to understand what's going on and how these cancer therapies influence the nervous system, microglia emerge as sort of the unifying principle, microglial reactivity, and the consequences of that reactivity on other cell types within the nervous system. And so, understanding that microglia and their reactive state to toxic or immune challenges was central to chemotherapy induced cognitive impairment, at least in preclinical models in the laboratory and confirm by human tissue studies. I worried at the very beginning of the pandemic that we might begin to see something that looks a lot like chemotherapy induced cognitive impairment, this syndrome that is characterized by impaired attention, memory, executive function, speed of information processing and multitasking. When just a few months into the pandemic, people began to flood neurologists' office complaining of exactly this syndrome. I felt that we needed to study it and so that was the beginning of what has become a really wonderful collaboration with Akiko Iwasaki. I reached out to her, kind of cold called her in the midst of the deep Covid shutdown and in 2020 and said, hey, I have this idea, would you like to work with me? She's as you know, just a thought leader in Covid biology and she's been an incredibly wonderful and valuable collaborator along the way in this.Eric Topol (08:19):Well, the two of you pairing up is kind of, wow, that's a powerful combination, no question. Now, I guess the other thing I wanted to get at is there've been many other studies that have been looking at Long Covid, how it affects the brain. The one that's frequently cited of course is the UK Biobank where they had CT or MRI scans before in people fortunately, and then once they had Covid or didn't get Covid and it had a lot of worrisome findings including atrophy and then there are others that in terms of this niche of where immune cells can be in the meninges, in the bone marrow or the skull of the brain. Could you comment on both those issues because they've been kind of coming back to haunt us in terms of the more serious potential effects of Covid on the brain?Michelle Monje (09:20):Yeah, absolutely and I will say that I think all of the studies are actually quite parsimonious. They all really kind of point towards the same biology, examining it at different levels. And so that UK Biobank study was so powerful because in what other context would someone have MRI scans across the population and cognitive testing prior to the Covid pandemic and then have paired same individual tests after a range of severity of Covid infection so it was just an incredibly important data set with control individuals in the same cohort of people. This longitudinal study has continued to inform us in such important ways and that study found that there were multiple findings. One is that there appears to be a small but significant atrophy in the neocortex. Two that there are also abnormalities in major white matter tracts, and three, that there is particular pathology within the olfactory system.(10:30):And we know that Covid induces as a very common early symptom, this loss of smell. Then together with those structural findings on MRI scans that individuals even with relatively mild acute disease, exhibited long-term deficits in cognitive function. That fits with some beautiful epidemiological studies that have been done across many thousands of individuals in multiple different geographic populations. Underscoring this consistent finding that Covid can induce lasting cognitive changes and as we begin to understand that biology, it fits with those structural changes that are observed. We do know that the olfactory system is particularly affected and so it makes sense that the olfactory system, which show those structural changes, the neocortical and white matter changes evident on MRI fit with what we found microscopically at the cellular and molecular level that highlighted a loss of myelinating oligodendrocytes, a loss of myelinated axons, a deficit in hippocampal new neuron production. All of those findings fit together with the structural changes that the UK Biobank study highlighted. So clearly this is a disease that has lasting impacts, and the challenge is to understand those better so that we can develop effective interventions for the many, many millions of people who are still struggling with decreases in their cognitive function long after Covid exposure affecting the world population.The Brain's Immune SystemEric Topol (12:17):Yeah, that's a great summary of how the Biobank data UK aligned with the work that you've done and I guess the other question just to round this out is for years we didn't think the brain had an immune response system, right? Then there's been a wakeup call about that, and maybe you could summarize what we know there.Michelle Monje (12:41):Absolutely. Yes, the brain is not, we used to call the nervous system an immuno privilege site, and it is not hidden from the immune system. It has its own and distinct immune system properties, but it's very clear from work by Jony Kipnis and others that there are in fact lymphatics in the nervous system. These are in the meninges. It's also become increasingly clear that there is a unique bone marrow niche in the skull from which many of the lymphocytes and other kinds of immune cells that survey and surveil the brain and spinal cord, that's where they come from. That's where they develop and that's where they return and the lymphatic drainage of the nervous system goes to distinct places like the posterior cervical lymph nodes. We are now understanding the sort of trafficking in and out of the nervous system of cells, and certainly understanding how that changes in the context of Covid, how those cells may be particularly responsive to the immune challenge initiated in the respiratory system is something that is an area of deep importance and active exploration. In fact, some of my ongoing collaborations and ongoing lab work focuses on exactly this question, how does the trafficking from the brain borders into the nervous system change after Covid? And how does potentially cellular surveillance of immune cells contribute of the nervous system contribute to the persistent microglial reactivity that we observe?Eric Topol (14:22):And do you have any hunch on what might be a successful worthwhile therapy to a candidate to test prospectively for this?Michelle Monje (14:30):I think it's too early to nominate candidates, but I think that the biology, the molecular and cellular biology is underscoring a role for particular cytokines and chemokines that are initiated by the immune response in the lung. And clear cellular targets, the goal I think the central goal being to normalize the neurovasculature and normalize microglial reactivity and so the question in this disease context and in others becomes, how can we kind of molecularly coach these reactive cells to go back to doing their normal jobs to being homeostatic? That's the challenge, but it's a surmountable challenge. It's one that I think that the scientific community can figure out, and it will be relevant not only to Covid, but also to many other consequences of immune challenges, including other post-infectious syndromes. It's not only Covid that causes long-term cognitive and other kinds of neurological and neuropsychiatric consequences. We saw this after the influenza pandemic in 1918. We've seen it after many other kinds of infectious challenges and it's important as we prepare for the next pandemic for the next global health challenge that we understand how the long-term consequences of an immune response to a particular pathogen play out.Eric Topol (15:58):No question and that I guess also would include myalgic encephalomyelitis and all the other post-infectious post viral syndromes that overlap with this. Now to switch gears, because that work is just by itself extraordinary but now there's this other field that you are a principal driver, leader, and that is cancer neuroscience. I didn't even know they had boards in neuro-oncology. I thought neurology was enough, but you got board certified in that too. This field is just exploding of interest because of the ability for cancer to cells to hijack neurons and neural circuits, which I guess the initial work goes way back but more recently, the fact that gliomas were just electrically charged. And so maybe you can frame this because this has not just amazing biology, but it's also introducing all sorts of therapeutic opportunities, including many ongoing trials.The Neuroscience of CancerMichelle Monje (17:08):Yes, yes and thank you for asking me about it. It's certainly one of my favorite things to think about, and perhaps as a bridge between the cognitive impairment that occurs after Covid and other inflammatory challenges and the neuroscience of cancer. I'll just highlight that maybe the common theme is it's important to understand the way cells talk to each other and that these sort of molecular conversations are happening on multiple scales and in unexpected ways, and they shape pathophysiology in a very important way. So continuing on that theme, we've known for many, many years, for decades in fact, that the nervous system and its activity shapes the development of the nervous system and actually it doesn't just shape the development of the nervous system where perhaps it's intuitive that the activity within the nervous system might sculpt the way that it forms, but it turns out that innervation is critical for development broadly, that innervation is necessary for organogenesis and that this is becoming clear in every organ that's been studied.(18:15):And so it stands to reason given that kind of perspective on the role that neuronal activity plays in normal development, plasticity, homeostasis, and regeneration of many different tissues, that the activity of the nervous system and those principles can be hijacked in the context of cancer, which is in many ways a disease of dysregulated development and regeneration. And so, I'm a neuro oncologist, I take care of children with a very terrible form of brain cancer called high-grade glioma and the most common form of high-grade glioma in kids occurs in the brain stem, it's called diffuse intrinsic pontine glioma (DIPG). It's really the worst disease you can imagine and understanding it has been the need to understand and treat it has been a guiding principle for me. And so, taking a big step back and trying to wrap my arms around the biology of these terrible high-grade gliomas like glioblastoma, like diffuse intrinsic pontine glioma, I wondered whether nervous system activity might influence cancer the way that it influences normal development and plasticity.(19:23):And as soon as we started to leverage tools of modern neuroscience like optogenetics to ask those questions to modulate the activity of neurons in a particular circuit and see how that influences cancer proliferation and growth, it was clear how very important this was, that active neurons and various subtypes very robustly drives the growth of these brain cancers. And so trying to understand the mechanisms by which that occurs so that we can target them therapeutically, it's become clear that the tumors don't just respond to activity regulated growth signals. They do. There are those paracrine factors, but that in brain cancer, the cancers actually integrate into the neural circuits themselves. That there are bonafide electrophysiological functional synapses that form between various types of neurons and high-grade glioma cells. We're discovering the same can occur in brain metastases from different organs, and that this principle by which neuronal activity drives the cancer is playing out in other tissues.(20:32):So right when we made these discoveries about glioma within this few years, discoveries were made in prostate cancer, in gastric cancer, colon cancer, skin cancer, pancreatic cancer. It seems that innervation is critically important for those tumor, and not just for their growth, but also for invasion metastasis, even initiation in diseases that are driven by particular oncogenes. There's an intersection between the power of those oncogenes to cause the cancer and the necessary environment for the cancer to form and that appears to also be regulated by the nervous system in very powerful ways. So, the exciting thing about recognizing this relatively unsettling feature of cancers is that as we understand it, the neuroscience of cancer becomes an entirely new pillar for therapy to combine with immunotherapy and more traditional cytotoxic therapies and we've been missing it until now. And so the opportunity exists now to leverage medicines that were developed for other reasons, for indications in neurology and cardiology and psychiatry medicines that target neurotransmitter receptors and ion channels that it turns out have a role in some forms of cancer. Now, each cancer has its own biology, so different types of neurons, different neurotransmitters, different neuropeptides play specific roles in that tissue context, but the principle is the same and so as we understand each cancer, we can start to understand what neuroscience inspired medicines we might leverage to better treat these tumors.Rewriting the Hallmarks of CancerEric Topol (22:17):Yeah, I mean it's amazing as a cardiologist to think that beta blockers could be used to help people with cancer and of course there are trials and some studies and particular cancers in that. One of the things that people maybe not outside of oncology don't follow these papers about hallmarks of cancer. There's been two editions, major editions of the hallmarks of cancer, and recently in the journal of cancer Cell, Douglas Hanahan and you wrote a classic about that the hallmarks need to be revised to include neuroscience. Maybe you could elaborate on that because it seems like this is a missing frontier that isn't acknowledged by some of the traditional views of cancer.Michelle Monje (23:08):Absolutely. So I think number one, I want to just give a shout out to Doug Hanahan and the role that the hallmarks of cancer, which is a review article that he wrote and has become sort of the Bible, if you will, of cancer biology really laying out common principles across cancer types that have provided a framework for us to understand this complex and diverse heterogeneous set of diseases. And so it was very exciting when he reached out and asked if I wanted to write this perspective, culminating nervous system interactions, neuroscience interactions as an emerging hallmark of cancer and as we examine them from that, we examine the neuroscience of cancer from that heuristic set of principles, this framework of principles of cancer biology, it's clear that there is a neural influence on the vast majority of them. We now understand from this exciting and burgeoning field that the nervous system can regulate cancer unregulated proliferation.(24:17):It promotes proliferation and growth. It promotes invasion and metastasis. It alters the immune microenvironment. It can both promote pro-tumour inflammation through neurotransmitter signaling. It can also help to modulate anti-tumor immunity. The crosstalk between immune cells, cancer cells and the nervous system are complex, profound, and I would argue incredibly important for immunotherapeutic approaches for cancer. At the same time that there are these diverse effects of the nervous system on cancer, cancer also influences the nervous system. And so, there's really this bidirectional crosstalk happening by which neurons in an activity dependent way, either in short range local neurons or in long range down a nerve or across a circuit, promote the pathophysiology of the cancer and you kind of know it's beneficial because the cancer does many different active things to increase innervation of the tumor. There is in a variety of different tissue context and disease states, elaboration of nervous system interactions through cancer derived either axonogenic or synaptogenic factors secretion, the nervous system remodels the nerves. It remodels the neural circuits to increase the connectivity of the nervous system with the cancer, and also to increase the activity of the nerves to increase the excitability of a neuron. And this contributes to not only driving the cancer, but to many of the really important symptoms that patients face with cancer, including tumor associated seizures as well as cancer associated pain.Eric Topol (26:07):Yeah, I mean this is actually so unusual to see a whole another look at what cancer is about. I mean, this is about as big a revision of thinking as I've seen at least in many, many years. The fact that you pulled this together about the new hallmarks also made me wonder because a number of years ago we went through this angiogenesis story whereby like this cancer can hijack blood vessels and promote it to growth. As you know very well, a lot of these anti-angiogenic efforts didn't go that well. That is they maybe had a small impact overall, but they didn't change the field in terms of success of therapy. I wonder if this is going to play out very differently. What are your thoughts about that? There's lots of shots on goal here and the trials have sprouted out very quickly to go after this.Michelle Monje (27:12):Yeah. I think it's important to recognize various microenvironmental effects on a cancer, including the nervous system effects as one piece of a puzzle that we need to put together in order to effectively treat the disease and I think to effectively treat a particularly very aggressive cancers, we need to hit this from multiple angles. Effective strategies will need to include targeting cell intrinsic vulnerabilities of the cancers as most traditional and targeted therapies are focused on doing right now together with decreasing the strong growth and metastasis influencing effects of the nervous system. I think that's one pillar of therapy that we really have been missing and that represents an important opportunity as well as leveraging the power of the immune system, which perhaps will only work optimally, particularly for solid tumors if you also address the nervous system influences on immune cells. And so I think that it's part of a holistic approach to effective therapy for tumors.(28:21):We have so far failed to treat with single agent or one dimensional kinds of approaches. We need to target not only the cell intrinsic vulnerabilities, the immunotherapeutic opportunities, and the nervous system mechanisms that are influencing all of that in really important ways. So I think it's important to design clinical research in the context of cancer neuroscience with that holistic view in mind. We don't think one strategy is going to be curative for difficult to treat tumors. I don't think that blocking neuron to glioma synapses in glioblastoma and DIPG will alone be sufficient but I do think it may be necessary for other therapies to work.Eric Topol (29:01):Yeah, I think that a perspective of in combination is extremely important. Now the overall, this a big fixation, if you will, about revving up immunotherapies various ways to do that. We'll talk about that in a moment, but without attention to the neurogenic side of this, that might be a problem. Now that gets me to the tumor type that you have put dedicated effort, which is this pediatric pontine tumor, which is horrendous, invading the brainstem and you've even done work with engineering T cells go after that. So you cover all the bases here. Can you tell us about where that stands? Because if you can prevail over that, perhaps that's one of the most challenging tumors of people there is.Diffuse Intrinsic Pontine GliomaMichelle Monje (29:54):Yeah, absolutely. So just a few words about this tumor, for those who don't know, diffuse intrinsic pontine glioma and other related tumors that happen in the thalamus and the spinal cord are the leading cause of brain tumor related death in kids. This is a universally fatal tumor type that tends to strike school age children and it's the worst thing I've ever seen in medicine. I mean, it really has been something that since I saw in medical school, I just have not been able to turn away from. And so studying it from many different perspectives, both the cell intrinsic vulnerabilities, the microenvironmental opportunities for therapy, and also the immunotherapeutic opportunities, it became clear to me that for a cancer that diffusely infiltrates the nervous system forms synapses with a circuit that it is invading and integrates into those circuits in the brainstem and spinal cord, that the only way to really effectively treat it would be a very precise and powerful targeted approach.(30:55):So immunotherapy was a very attractive set of approaches because in the best case, you have an engineered T cell or other immune cell that can go in and kind of like a special forces agent just find the T cells and disintegrate them from this synaptically integrated circuit that has formed. And so I began to search for cell surface targets on this particular type of cancer and found that one of the antigens for which many immunotherapy tools had already been made because it's prevalent in other kinds of cancer, was very highly expressed on diffuse midline gliomas, including diffuse intrinsic pontine glioma. And so this target, which is a sugar, actually it's a disialoganglioside called GD2, is extraordinarily highly and uniformly expressed on DIPG because the oncogene that drives DIPG and other related tumors, which is actually a mutation in genes encoding histone H3, which causes broad epigenetic dysregulation, strongly upregulates the synthesis genes for GD2.(32:05):And so it's a really ideal immunotherapeutic target on every cell, and it's at extraordinarily high levels. Again, speaking to the importance of collaboration, right when we made this discovery, one of the leaders in chimeric antigen receptor T cell therapy, CAR-T cell therapy named Crystal Mackall at Stanford and her offices is in my building, so I walked over and knocked on the door and said, do you want to work on this together? And so, we've been working together ever since and found that indeed CAR-T cells targeting GD2 cure our mice models, which is something I have never seen. I develop these models and have never seen anything that's effective, but it's always easier to help a mouse than to help a person and so we knew that the clinical translation would be challenging. We also knew that it would require intentionally causing inflammation in the brainstem that's already compromised neurocritical care.(33:07):I'm going to not use the word nightmare, but it's a set of challenges that we had to think about really carefully. We spent a lot of time and collaborated with our neurocritical care colleagues, our neurosurgical colleagues, and developed a protocol that had many, we anticipated this neurotoxicity of causing inflammation in the brain stem and we had many safety measures built in an anticipatory way, gave the therapy only in the intensive care unit and had many safeguards in place to treat anticipated hydrocephalus and other consequences of inducing inflammation in this particular region of the nervous system. Over the last four years, we began this trial at the beginning of the pandemic in June 2020 so that was its own unique set of challenges. We've seen some really incredibly exciting promising results we've presented. We've published some of our early experience, we're getting ready to present the larger experience.(34:14):And we've presented this at meetings. We've seen some kids go from wheelchair bound to walking in a matter of weeks. It's been just incredible and reduced to nearly nothing. Other kids have had less robust responses the therapy has really helped some kids, and it's failed others. And so we're working very hard right now to understand what factors affect this heterogeneity and response so that we can achieve durable and complete responses for every kid. I will tell you that my leading hypothesis right now is that it is the intersection of the immuno-oncology with the neuroscience that is modulating the response. Certainly, there are immune suppressive mechanisms, but there's also, I think, really important influences of neurotransmitters and neuropeptides on the immune response against central nervous system cancers in the central nervous system and so we're working hard to understand that crosstalk and develop strategies to optimize this promising therapy.(35:19):But it really has been one of the highlights of my professional life to see kids with DIPG and spinal cord diffuse midline gliomas get better even for a while, something I hoped at some point in my career to ever see and having seen it now so frequently in our trial patients, I'm really hopeful that this approach will be part of the answer. I'm hopeful for the future of immuno-oncology for solid tumors in general. I think when we understand the tumor microenvironment, we will be able to leverage these really powerful therapies in a better way.A Couple of Notable Neuroscientists!Eric Topol (35:58):Wow. Yeah, I mean, if anybody was to try to crack the case of one of the most challenging cancers ever seen, you would be that person. Now, speaking of collaboration, I didn't know this until I was getting ready to have the conversation with you, but your husband, Karl Deisseroth is like the optogenetics father. He is another exceptional rarefied leader in neuroscience. So, do you collaborate with him?Michelle Monje (36:35):We do collaborate, and in fact, so I met Karl when I was a medical student, and he was an intern in psychiatry so we go back a fair ways. We're both MD PhD students at Stanford, and we've been collaborating for many, many years in many different ways both in the clinic, I met him when I was a sub in neurology, and he was the psychiatry intern on neurology. We collaborated when he was a postdoc, and I was a graduate student on some neurobiological studies. We have four children. I have one stepson and four children that I can take full credit for and so we collaborated on five kids. For a while I really wanted, because he is such an amazing scientist, he's such a thought leader in neuroscience, as I started my own independent laboratory, I wanted to not be entirely in his shadow and so I did make it a point to do, I used optogenetics, but I took the course and bought the tools and did it all myself. I did the last questions at the dinner, but I really wanted to be kind of independent in the beginning. Now that my career and my laboratory is a bit more established, we are formally collaborating on some studies because he's a brilliant guy.Eric Topol (38:01):I think that you fit into that category too, and a bit more established is maybe the biggest understatement I've heard in a long time. The body of work you've done already at a young age is just beyond belief and you're on a tear to have big impact and many across the board. As you said, many things that you're learning about the brain with all of its challenges will apply to cancer, generally will apply to hopefully someday a treatment that's effective for Long Covid affects the brain and so many other things. So Michelle, I'm so grateful to have had this conversation. You are an inspirational force. You've covered a lot of ground in a short time and between you and your husband, I don't know that that's got to be the most dynamic duo of neuroscience that exists on the planet, in the human species, I guess. I just can't imagine what those kids of yours are going to do when they grow up.Michelle Monje (39:07):I'm biased, but they're pretty great kids.Eric Topol (39:10):Well, thank you for this and I think the folks that I get to listen to this will certainly get charged up. They'll realize the work that you're doing and the people you collaborate with and making cold calls to people. That's another story in itself that how you can get transdisciplinary efforts when you just approach somebody who's doing some good work. Another lesson just kind of hidden in our discussion. Thanks very much.Michelle Monje (39:40):Oh, thank you. It's wonderful to talk with you, Eric.*******************************************************Please share if your found this podcast informative Get full access to Ground Truths at erictopol.substack.com/subscribe

Nora Schmidt noticed that her daughter Maddie's right eye was crossing inward, one day after she had gone to her eye doctor for a simple eye appointment in which everything looked fine. This situation, which according to her Eye Doctor and a Pediatric Opthamologist could have been a common condition known as Strabismus, but  instead turned out to be DIPG. Nora will talk about Maddie's journey which lasted for just over 10 months before her passing from this Pediatric Brain Cancer on December 31st of 2022. 

Kim Skief is a spiritual transformation coach and a highly sensitive person. She is gifted in empathy and listening skills and thoroughly enjoys inspiring women to step into a life they love. Kim shares about her three miscarriages and the loss of her eleven-year-old daughter. Her daughter Grace was diagnosed with DIPG, brain cancer and died three months later. Kim shared very openly about her grief journey of the last several years. Questions she asked herself during her early grief. What did I do wrong? What is the right way to grieve? Etc... You will hear about: Anger at God The would of, should of and could of's How grief changes you. Growing apart from your spouse. Tips for the Holidays. As the grieving person your responsibility is to yourself. If other people object to that, that is something they will need to figure out. -- Kim Skief Connect with Kim: https://www.facebook.com/luvyourselflifecoaching?mibextid=ZbWKwL Connect with Teresa: EMAIL: teresa@livingaftergrief.com Facebook https://www.facebook.com/.livingaftergrief/. Instagram: @livingaftergrief Website: www.livingaftergrief.com click and schedule a free complimentary coaching call: https://livingaftergrief.coachesconsole.com/calendar/grief-discovery-call Podcast Guest: https://livingaftergrief.coachesconsole.com/calendar/podcast-interview-call

In this premier episode, Matt and Nick discuss cutting edge Science topics and decide, once and for all, has Science gone too far? Topics discussed include Artificial Intelligence and its inherant dangers, Diffuse intrinsic pontine glioma (DIPG), human bias in data, social media echo chamber, Spin Launch, satellites, G Force, space debris, and ancient building materials.  Sources: Scientists use AI to identify new drug combination for children with incurable brain cancer - The Institute of Cancer Research, London (icr.ac.uk) What it is and why it matters | SAS SpinLaunch If you want to recommend some Science Topics for us to discuss on a future episode of this podcast, you can join our Facebook Group here: The Chamber of Knowledge | Facebook . 

Becoming a Nurse and caring for Pediatric Cancer patients is a very difficult job in itself and becoming a nurse and working with DIPG patients and their families makes their jobs only more difficult. On today's podcast Nurse Navigators Leslie Jared and Lauren Kirages will talk about their experiences working with these kids who have been diagnosed with this type of Brain Cancer which, as we know, still does not have any survivors after a certain time period. Leslie and Lauren will  speak very passionately about the love that they have for the kids and families that they work with, and the passion that they have for their roles in this DIPG fight.

Grace Wethor began her life as a self described "Super Active Child" as she was a Dancer, a member of a World Championship Synchronized Figure Skating Team at the age of 9, then joining the Circus when she was 11, hanging by her toes 30 feet in the air on a trapeze.  When she was 13 years old, Grace was diagnosed with a Brain Stem Glioma which is a form of Pediatric Brain Cancer which looks a great deal like DIPG but has never been diagnosed as such.  Grace was diagnosed on January 9th of 2015 and now nearly 9 years later has been going strong professionally as she is an Award Winning Film Director, and Actress, a best Selling Author, and the CEO of her own company known as GRAE Entertainment. Grace is also a very public advocate for the cause of Pediatric Brain Cancer as she has made it a mission to help as many of her peers with different forms of Brain Cancer as she can.

Amanda DeCicco's son Jayden was born while Amanda was a high school senior. After completing her studies  and raising Jayden , he was diagnosed with DIPG at the age of 6. On today's podcast Amanda will talk about what her beloved son went through before his passing in April of 2015, how she turned her grief into becoming a Born Again Christian, writing a book called THE HERO WITHIN, and helping other families who are in their own Pediatric Cancer battles.

BUFFALO, NY- October 9, 2023 – A new editorial perspective was published in Oncotarget's Volume 14 on October 4, 2023, entitled, “STAT3 as a biologically relevant target in H3K27M-mutant diffuse midline glioma.” Pediatric H3K27M-mutant diffuse midline gliomas (DMGs), including those formerly classified as diffuse intrinsic pontine gliomas (DIPG), are uniformly lethal central nervous system malignancies. Children diagnosed with these tumors have an extremely poor prognosis, with a median survival of approximately 12 months. The current standard of care for DMG includes possible biopsy for diagnostic confirmation and a 6-week course of palliative radiation. Despite enormous effort toward the development of novel therapeutics in DMG, chemotherapy remains ineffective in this disease. “Indeed, over 100 clinical trials for chemotherapeutics in DMG have failed to show therapeutic benefit [5].” In their new editorial perspective, researchers Jacob B. Anderson, Samantha M. Bouchal, Liang Zhang, and David J. Daniels from the Mayo Clinic discussed the currently available literature and their recent study on the Signal Transducer and Activator of Transcription (STAT) as a biologically relevant therapeutic target in H3K27M-mutant DMGs. In their recently published manuscript, the lab performed a screen of drugs currently in clinical use or clinical trials for efficacy against a library of H3K27Mmutant and H3-wildtype patient-derived cell lines. The results of this drug screen identified the STAT3 signaling pathway as a novel target in DMG. “Until recently, however, STAT3 was not a druggable target.” DOI - https://doi.org/10.18632/oncotarget.28516 Correspondence to - David J. Daniels - daniels.david@mayo.edu Sign up for free Altmetric alerts about this article - https://oncotarget.altmetric.com/details/email_updates?id=10.18632%2Foncotarget.28516 Subscribe for free publication alerts from Oncotarget - https://www.oncotarget.com/subscribe/ Keywords - cancer, H3K27M, DMG, DIPG, midline glioma, STAT3 About Oncotarget Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. To learn more about Oncotarget, please visit https://www.oncotarget.com and connect with us: SoundCloud - https://soundcloud.com/oncotarget Facebook - https://www.facebook.com/Oncotarget/ X - https://twitter.com/oncotarget Instagram - https://www.instagram.com/oncotargetjrnl/ YouTube - https://www.youtube.com/@OncotargetJournal LinkedIn - https://www.linkedin.com/company/oncotarget Pinterest - https://www.pinterest.com/oncotarget/ Reddit - https://www.reddit.com/user/Oncotarget/ Media Contact MEDIA@IMPACTJOURNALS.COM 18009220957

Christie Blankenship and her husband decided to adopt 16 month old Reese in 2017 after she was so abused by biological family members that Reese was unable to to walk, talk, or see. 2 years later Reese was diagnosed with DIPG on May 29th of 2019, and exactly 4 years later on May 29th of this year she passed away from this dreaded form of Pediatric Brain cancer. This is a truly incredible story of a mother who did everything possible to make a life for her daughter that was worth living.  

Mina and Mark Stendardo from The Storm The Heavens Fund join THE LOFT to share their story and spread awareness for their daughter Philomena who passed away from the rare and deadly disease called Diffuse intrinsic pontine glioma (DIPG) - an aggressive type of childhood cancer that forms in the brainstem. They also talk about the mural made by talented artist Jordan Spector in dedication to Philomena as well as the inspiration behind it. Their movement has generated over 1 million dollars in research and continues to motivate, inspire, and save lives every single day.

15-year-old Austin Kahn passed away from a terminal brain tumor just days after his birthday. For his parents, Christopher and Jeanette Kahn, unity and good communication in the middle of tragedy helped keep their family together, even as it was falling apart. In this second part of a two-part series, Jeanette and Christopher share how their family learned to process and grieve the loss of their son. Together, they discuss the lessons of courage, determination, and acceptance Austin exemplified and the good work the parents are doing in Austin's memory through the “Alex's Lemonade Stand Foundation for Childhood Cancer.”  Even though we live in challenging times, we can become Relentlessly Resilient as we lean on and learn from one another's experiences. Hosts Jennie Taylor and Michelle Scharf are no strangers to overcoming adversity; Michelle lost her husband to cancer, while Jennie's husband, Major Brent Taylor, was killed in the service of our country. Their stories bond them together, and now listeners can join them weekly as they visit with others enduring challenges and who teach us how they are exercising resiliency, finding value in their grief, and purpose in moving forward.  Listen to the Relentlessly Resilient Podcast regularly on your favorite platform, at kslpodcasts.com, kslnewsradio.com, or on the KSL NewsRadio App. Join the Resilience conversation on Facebook at @RelentlesslyResilient and Instagram @RelentlesslyResilientPodcast. Produced by KellieAnn Halvorsen.See omnystudio.com/listener for privacy information.

On today's podcast Stacy Sands will talk about her son Hudson, who was 5 years old in October of 2019  when he was diagnosed with DIPG. Despite his diagnosis, Hudson was able to travel to such places as Galveston  Texas, San Diego California, and the Missouri Ozark Mountains with his family, before he passed away on December 18th of 2020. Stacey will also discuss the 4 different hospitals that Hudson went to as she and her husband Todd did everything possible to help their beloved son.

15-year-old Austin Kahn passed away from a terminal brain tumor just days after his birthday. For his parents, Christopher and Jeanette Kahn, unity and good communication in the middle of tragedy helped keep their family together, even as it was falling apart. In this first part of a two-part series, Christopher shares Austin's story of courage, determination, and acceptance in the face of death. In the second part of the series, his wife Jeanette joins to talk about the grief process and the good work the parents are doing in Austin's memory through the “Alex's Lemonade Stand Foundation for Childhood Cancer.”  Even though we live in challenging times, we can become Relentlessly Resilient as we lean on and learn from one another's experiences. Hosts Jennie Taylor and Michelle Scharf are no strangers to overcoming adversity; Michelle lost her husband to cancer, while Jennie's husband, Major Brent Taylor, was killed in the service of our country. Their stories bond them together, and now listeners can join them weekly as they visit with others enduring challenges and who teach us how they are exercising resiliency, finding value in their grief, and purpose in moving forward.  Listen to the Relentlessly Resilient Podcast regularly on your favorite platform, at kslpodcasts.com, kslnewsradio.com, or on the KSL NewsRadio App. Join the Resilience conversation on Facebook at @RelentlesslyResilient and Instagram @RelentlesslyResilientPodcast. Produced by KellieAnn Halvorsen.See omnystudio.com/listener for privacy information.

After having difficulty controlling the ball during soccer practice and having her leg give out after that, Mina Carrol's 7 year old daughter Philomena  was diagnosed with the most dreaded DIPG.  During the so called "Honeymoon" period when Philomena was initially feeling well enough after radiation treatment, she and her family were able to travel to Rome to meet the Pope. Unfortunately Philomena's condition worsened after that and she passed away just 10 months after her diagnosis. Mina will also discuss her STORM THE HEAVENS FUND which is doing everything possible to support others in this DIPG fight. 

After complaining of blinding headaches in early May of 2020,   Chelsea Johnson took her 6 year old daughter Ansley to her doctor and shortly thereafter she was diagnosed with the heartless Pediatric Brain cancer DIPG. Chelsea will talk about the 10  month Clinical Trial that Ansley went through at the University of Florida and after being dismissed from the trial, she was then given Natural Remedies which helped to extend her life by a few months, before her passing in July of 2021. Chelsea will talk in detail about her thoughts on Natural Remedies and also will talk about her non-profit ARMY FOR ANSLEY.

A new editorial paper was published in Oncotarget's Volume 14 on May 12, 2023, entitled, “Targeting H3K27me3 loss in pediatric brain tumors - a perspective on epigenetically guided cancer therapy.” High-grade tumors of the central nervous system, including medulloblastoma, ependymoma and DMG (diffuse midline glioma, formerly known as DIPG (diffuse intrinsic pontine glioma)), constitute a major challenge in pediatric oncology. They are characterized by an aggressive growth and high relapse rates and claim the lives of many pediatric cancer patients. Both medulloblastoma and ependymoma are treated with surgical resection followed by adjuvant radiation therapy. DMG, on the other hand, diffusely infiltrates the brain stem making a resection virtually impossible. Thus, radiotherapy is the primary treatment modality for this tumor. While radiation temporarily attenuates the progression of DMG this brain cancer remains incurable and most children succumb to their disease. In his new editorial, Dr. Michael Goldstein from Johns Hopkins University School of Medicine discusses the extensively investigated molecular profiles of the aforementioned pediatric brain tumors demonstrating distinct epigenetic traits. “Strikingly, a global loss of H3K27 tri-methylation (H3K27me3) as a result of the dominant-negative histone H3K27M mutation was found to be a hallmark of DMG occurring in the majority of the tumors.” H3K27me3 is a product of the EZH2 histone methyltransferase affecting multiple cellular processes including transcription, chromatin structure and DNA damage response. Similarly, the aggressive PFA ependymoma subgroup is characterized by a lack of H3K27me3 due to an overexpression of the EZHIP protein that acts as an EZH2 inhibitor whereas less aggressive PFB tumors retain normal H3K27me3 levels. However, no comprehensive analysis of H3K27me3 expression patterns in medulloblastoma has been performed and the significance of this epigenetic mark in pediatric brain tumors has remained unknown. “To address this, we have investigated the levels of the H3K27me3 histone mark and its role in treatment response of non-WNT/SHH medulloblastoma comprising group 3 and group 4 tumors. We demonstrated that about 50% of the tumors in patients with group 3 and group 4 medulloblastoma are H3K27me3 deficient. Strikingly, loss of H3K27me3 was associated with high relapse rates and poor survival.” DOI - https://doi.org/10.18632/oncotarget.28427 Correspondence to - Michael Goldstein - mgolds33@jhu.edu Sign up for free Altmetric alerts about this article - https://oncotarget.altmetric.com/details/email_updates?id=10.18632%2Foncotarget.28427 Subscribe for free publication alerts from Oncotarget - https://www.oncotarget.com/subscribe/ Keywords - cancer, epigenetics, brain tumor, EZH2, H3K27me3, radiation therapy About Oncotarget Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. To learn more about Oncotarget, please visit https://www.oncotarget.com and connect with us: SoundCloud - https://soundcloud.com/oncotarget Facebook - https://www.facebook.com/Oncotarget/ Twitter - https://twitter.com/oncotarget Instagram - https://www.instagram.com/oncotargetjrnl/ YouTube - https://www.youtube.com/@OncotargetJournal LinkedIn - https://www.linkedin.com/company/oncotarget Pinterest - https://www.pinterest.com/oncotarget/ Reddit - https://www.reddit.com/user/Oncotarget/ Media Contact MEDIA@IMPACTJOURNALS.COM 18009220957

One June 13th of 2020 Summer Stumpf heard the words that no parent should ever hear, namely that her 11 year old son Grayson had DIPG. Over the next 377 days Grayson fought his battle against this dreaded disease before passing away on June 25th of 2021. Summer will talk about her beloved son and how she started her non-profit LIVE GRAY'S WAY which was set up in memory of Grayson and the way he lived his way too short life. This non-profit is helping in the fight against DIPG and Summer spends most of her time on Live Gray's Way and in helping other parents who have been through the same situation as did the Stumpf family. 

On June 13th of 2020 Summer Stumpf heard the words that no parent should ever hear, namely that her 11 year old son Grayson had DIPG. Over the next 377 days Grayson fought his battle against this dreaded disease before passing away on June 25th of 2021. Summer will talk about her beloved son and how she started her non-profit LIVE GRAY'S WAY, which was set up in memory of Grayson and the way he lived his way too short life.  This non-profit has raised 1.6 million dollars to help in the fight against DIPG and Summer spends most of her time on Live Gray's Way and in helping other parents who have been through or are going through the same situation as did the Stumpf family. 

Katie Thornhill and I continue the conversation we began last week about the aftermath of her son Marcus's diagnosis with DIPG brain cancer and his homegoing just shy of his eighth birthday.  We address issues related to lack of control, surrender, finding peace, and the importance of vulnerability in our journeys.  Katie also shares about her own podcast and how we can truly be "anchored in always."  Our discussion is uplifting and encouraging, and I believe you'll be blessed by listening in!   Click HERE to visit Katie's website, where you can find a link to the "Anchored in Always" podcast and her Christian Life Coaching information.Click HERE to connect with the Marcus Strong Foundation on Facebook. We'd love for you to connect with us here at While We're Waiting! Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parentsClick HERE to learn more about our network of While We're Waiting support groups all across the country. Click HERE to follow our public Facebook pageClick HERE to follow us on Instagram Click HERE to follow us on Twitter Click HERE to make a tax-deductible donation to the While We're Waiting ministryContact Jill by email at: jill@whilewerewaiting.org

On March 2nd of 2022, 22 year old Joe Thompson was diagnosed with DIPG , after his first diagnosis of Vertigo turned out not to be the case. Joe will talk about how the past 14 months have been as from the beginning he has looked at his situation in the most positive light possible. Joe has turned his focus which after graduating from the University of Alabama was on his chosen career path, to one that concentrates on serving others. 

Do you know that DIPG, a rare pediatric brain cancer, has a nearly 0% survival rate?In this episode, we're revisiting our conversation with Jenny Mosier from episode 60. Her son, Michael Mosier, was diagnosed with a DIPG brain tumor at just 6 years old and it had an everlasting effect on their family.Inspired by her son's determination and charitable spirit, Jenny created a foundation in his memory to find a cure and help families with children going through treatment. Truman Charities was also touched by her son's story, where we unanimously decided to host a fundraiser benefiting ChadTough Defeat DIPG Foundation!Tune in to this episode to learn how ChadTough is raising awareness for this seriously underfunded form of cancer, and ways you can join the mission to defeat DIPG.Email us at info@trumancharities.com to RSVP for our fundraiser for the ChadTough Defeat DIPG Foundation on April 2nd!Find more information on ChadTough Defeat DIPG Foundation on their website: https://www.chadtough.orgConnect with ChadTough:Facebook: https://www.facebook.com/chadtoughfoundationTwitter: https://twitter.com/chadtoughYoutube: https://www.youtube.com/channel/UCE7VJnTsk-y6nlTILPdBdIgInstagram: https://www.instagram.com/chadtoughdefeatdipg/LinkedIn: https://www.linkedin.com/company/chadtough/Connect with Jamie at Truman Charities:FacebookInstagramLinkedInWebsiteYouTubeEmail: info@trumancharities.comThis episode was post produced by Podcast Boutique https://podcastboutique.com/

Stef's back from the YSC Summit and Amy has a giggle at the expense of Laughter Yoga. Fun in public really gets Stef's goat. Then, what's the deal with longevity? Perhaps the Seventh Day Adventists can spill the beans…or at least share them? Next, it's our *privilege* to read a letter from a listener that holds a mirror up to cancer spaces and asks why we're all so eager to get back to our old bodies—weren't they trying to kill us?? Here's the skinny; it's time for everyone to start reading the room. The body you're shaming might not (just) be your own. Another letter (that begins at 26:10 for those who need to peace out) breaks our hearts with a request for resources for a kiddo with a terminal brain tumor. Have we mentioned recently that a mere 4% of overall funding goes to childhood cancers? RATS continues the conversation on DIPG, a devastating disease of the brain. We've got books, podcasts, and websites to recommend, but what's really needed is research. Links are below to donate in Walter's memory. https://www.chadtough.orghttps://rallyfoundation.orghttps://curethekids.orgCancer for Breakfast is hosted by Amy Dials and Stefanie LeJeunesse, and is produced by Nathan McGehee.Our theme music is by Vyvyvyr. RATS theme song is by Jessica Boudreaux of Summer Cannibals. Want to support the podcast? We're on BuyMeACoffee and Patreon. We appreciate it so much when you rate, review or subscribe on Apple Podcasts,  you can do that RIGHT HERE!  Follow us on *Instagram (*we made a new account!) @cancerforbreakfastpod or on Twitter @cancerbreakfastSubmit a letter via e-mail cancerforbreakfast@gmail.comAnd as always, thanks for listening! 

Keith and Brooke Desserich's daughter Elena passed away from DIPG after a less than 9 month fight against a Pediatric Brain cancer which has no long term survivor's. Keith will talk about Elena and her fight and THE CURE STARTS NOW Foundation which he and Brooke founded in 2007. This foundation has a mission to cure ALL Cancers and he pledges to stay with the foundation until his goal of ending Pediatric Cancer is completed. Keith has been at the forefront of research and commitment to trying to end DIPG for the past 15 years, which he and others believe is a key to accomplishing what he calls the Home Run Cure.