Donna is a pediatric cancer research advocate. Her son Erik battled neuroblastoma and suffered a late relapse, diagnosed in 1991 at age 6 and died in 2010 at age 24. She has been involved in the pediatric cancer community for decades. She serves on several councils including the NCI Pediatric Central Review Board, NCI Pediatric and Adolescent Solid Tumor Steering Committee, FDA Patient Representative, NANT Parent Advisory Council, prior founding Board of Directors of Coalition Against Childhood Cancer, DOD CMCRP Rare Cancers Research Programmatic Panel, SIOPEN Advocates Committee, and ACCELERATE Scientific Steering Committee. Donna has worked for Solving Kids' Cancer since 2010 managing research programs and for Solving Kids' Cancer UK supporting neuroblastoma families and on the research team since 2015, and has coauthored many peer-reviewed journal articles and book chapters on pediatric oncology. She enjoys mentoring young advocates. Donna has a BS in Chemical Engineering, lives in Virginia with her husband, and they have 3 surviving married children and 9 grandchildren.

Contact donna @ [email protected]

Tiffany @ [email protected]

Kelly @ [email protected]

Support the show

In this episode, we speak with Prof. Johannes Gojo, MD, PhD, one of the world’s foremost experts in pediatric neuro-oncology. Dr. Gojo shares groundbreaking research into ETMR and ATRT brain tumors, the promise of liquid biopsies, and how international collaboration through CARE for RARE (established by Solving Kids’ Cancer) is transforming outcomes for children with rare brain tumors.

We also highlight a newly funded research project, supported by multiple organizations including Gold Ribbon Kids, that aims to deliver precision medicine breakthroughs for some of the most aggressive childhood cancers.

Topics Covered

• Why ETMR and ATRT are so difficult to treat
• The role of liquid biopsies in monitoring and guiding therapy
• How CARE for RARE and global consortia accelerate progress
• The impact of family-driven advocacy on scientific discovery
• The hope behind newly funded research initiatives

📧 Connect with us:

• Tiffany McConathy – [email protected]
  
  
• Kelly from the National Pediatric Cancer Foundation – [email protected]

Support the show

Susan Latta LMFT, FT is a licensed Marriage and Family Therapist and the Department Head of Clinical Services at the Austin Hatcher Foundation for Pediatric Cancer. Susan holds a Fellow in Thanatology, the study of death and dying, and received her BS from Cal Poly San Luis Obispo University and her MA from Fuller Theological Seminary. Susan brings 35 years of counseling individuals, children, and families through the many challenges that occur when a child is diagnosed with cancer, with over 23 years of experience in the medical field. Susan loves to be in nature, travel, cuddle with her 2 miniature dachshunds, Gertie and Maggie and find time to return to California to see her family and to walk on the beaches of the Pacific Ocean.

Austin Hatcher Foundation's Mission: 

The Austin Hatcher Foundation’s mission is to provide a lifetime of free, comprehensive support to childhood cancer patients and their families through mental, behavioral, educational, and social services, so they can cope in the present and thrive in the future. 

Austin Hatcher Foundation's Approach: 

Recognizing that pediatric cancer impacts every aspect of a family’s life, the Austin Hatcher Foundation provides comprehensive, integrative care for childhood cancer patients, survivors, and their families — supporting cognitive development, emotional well-being, and essential life skills.

Through a unique blend of therapy, education, and psychological support, the Foundation addresses each family’s complex and evolving needs, helping them build resilience, restore hope, and thrive through every stage of the cancer journey.

Listeners can learn more by visiting HatcherFoundation.org

Goldribbon-kids.org

Nationalpcf.org 

Email tiffany @ [email protected]

email Kelly @ [email protected]

Support the show

As Principal Investigator of the International PPB/DICER1 Registry and founder of the International OTST Registry, Dr. Schultz is at the forefront of developing novel treatments for some of the rarest and most aggressive pediatric cancers.

🎧 In this episode, we dive deep into:
 ✨ The importance of registries in rare cancer research
 ✨ What families facing a DICER1 diagnosis need to know
 ✨ Her inspiring journey in pediatric oncology
 ✨ Why collaboration is key to hope and healing

This is an episode you won’t want to miss.

 #AnUnexpectedFight #DICER1 #PediatricCancer #RareCancerAwareness #PodcastRelease #PPB #ChildhoodCancerAwareness #GoldRibbonKids #KrisAnnSchultz

check out more about Dr. Schultz or contact her at ppbregistry.org

goldribbon-kids.org, Tiffany [email protected]

nationalpcf.org, Kelly [email protected]

Support the show

Tiffany, Kelly and Steve talk about emotions associated with pediatric cancer diagnosis from the perspective of a pediatric cancer survivor, a pediatric cancer parent and a bereaved pediatric cancer parent. 

Reintroducing: Steve Garraty was lucky to be graduating high school. He was partying and living a lifestyle that wasn’t sustainable. His priorities were upside down. He was running towards the edge of a cliff and unable to stop himself. Then God intervened. He heard the three dreaded words none of us ever want to hear: “You have cancer.”

After embarking on chemotherapy and a year of hell, as all his friends headed off to college, he beat the cancer. He went from victim to victor, from asking “Why me” to “Why not me?” He ended up not only surviving but thriving.

Today, Steve has been married for more than thirty years to his beautiful wife, Wendy. They have raised two incredible kids who have both graduated college and begun their own careers. Steve has had a successful career in sales and leadership. He’s hired more than 250 people in his career. He’s coached and developed more than a thousand sales contributors and sales leaders. He cares deeply about helping others and seeing others achieve success and accomplishing their goals.

He views cancer as being the best thing to ever happen to him. It changed everything…for the better! He grew from his experience. It set the foundation to be a better husband, father, friend, and leader. He writes to share his experience to help others alter their perspective and view the glass as full!

Steve resides in Tampa, Florida. He enjoys traveling, music, exercise, watching UGA football with his son, and spending as much time with family as possible.

https://stevegarraty.com/

https://www.instagram.com/stevegarratyauthor/

If you want to donate to Gold Ribbon Kids: https://givebutter.com/gold-ribbon-kids-cancer-foundation

to learn more go to:
goldribbon-kids.org
nationalpcf.org

[email protected] - Kelly
[email protected] - Tiffany

Support the show

Dr. Satterlee is an Assistant Professor at the University of North Carolina at Chapel Hill and the Director of the Screening Live Cancer Explants Program and Core Facility at Eshelman Innovation — an academic institute focused on translating groundbreaking ideas into real solutions for patients.

Since beginning his PhD in 2011 as a National Science Foundation Graduate Research Fellow, Dr. Satterlee has spent over 14 years developing new cancer therapies and better, more predictive models to test those therapies. Through this work, he’s seen firsthand the limitations of traditional cancer models — from the artificiality of in vitro assays, to the high cost of animal studies, and the overwhelming lack of standardization across the field.

This work is deeply personal for him. At 20 years old, he was diagnosed with a rare, heterogeneous brain tumor. With no clear consensus among his doctors, it was ultimately up to him — the patient — to choose between standard-of-care whole brain radiation or a newer chemotherapy option with promising early data. It was in that moment that he knew: there had to be a better way to help providers and patients make informed treatment decisions. And today, he’s building that tool.

In 2016, Dr. Satterlee began developing a unique drug screening platform alongside an interdisciplinary team of scientists and clinicians, including pediatric neuro-oncologist Dr. David Kram. Their system allows for real-time testing of patient tumor tissue — taken straight from the operating room to the lab. It’s already being used to help identify more effective therapies, minimize reliance on animal models, guide clinical trial enrollment, and inform real-time treatment decisions for patients with brain tumors, as well as other cancers like ovarian and lung.

find out more @ https://slice.unc.edu/

You can also get involved with the Gold Ribbon Kids Cancer Foundation or the National Pediatric Cancer Foundation through fundraising, volunteering, promoting awareness, or contributing to pediatric cancer research. Visit goldribbon-kids.org or nationalpcf.org for more information

To contact Tiffany, please email [email protected]
To contact Kelly, please email [email protected]

Support the show

Claire L. Carter, Ph.D., is an Assistant Member of the Center for Discovery and Innovation; Assistant Professor of Pathology at Hackensack Meridian School of Medicine; and Co-Director of the Mass Spectrometry and Analytical Pharmacology Shared Resource at the NCI-designated Georgetown Lombardi Comprehensive Cancer Center.

Dr. Carter completed her Ph.D. in Chemistry at the University of Birmingham, UK, under the supervision of Professor Josephine Bunch. She then moved to the US for a postdoctoral appointment at the University of Maryland Baltimore, where she worked on normal tissue radiation injury. At the Hackensack Meridian Center for Discovery and Innovation, Dr. Carter has built a translational pediatric neuro-oncology research program in partnership with Dr. Derek Hanson, Director of Pediatric Neuro-oncology, Joseph M. Sanzari Children’s Hospital, Hackensack University Medical Center.

Dr. Carter possesses a rare translational background that combines expertise in bioanalytical chemistry, clinical histopathology and biomedical science. Her group are using next generation imaging techniques to develop a deep understanding of the biological and transitional states of tumor cells as shaped by their spatiotemporal location within patient tumors and preclinical models. Their focus is on targeting lipid signaling and metabolism for less toxic and more efficacious treatments in highly aggressive pediatric brain tumors. In addition to using mass spectrometry imaging for intratumoral pharmacokinetic/pharmacodynamic (PK/PD) studies to identify more efficacious treatment regimens that can be rapidly translated into clinic gain.

You can also get involved with the Gold Ribbon Kids Cancer Foundation or the National Pediatric Cancer Foundation through fundraising, volunteering, promoting awareness, or contributing to pediatric cancer research. Visit goldribbon-kids.org or nationalpcf.org for more information

To contact Tiffany, please email [email protected]
To contact Kelly, please email [email protected]

Support the show

Richard Gaster, M.D., Ph.D., is a Managing Partner at venBio with experience as a physician, entrepreneur, and life science investor. Now, a cancer dad. 

He has helped to launch, invest, and serve on the board of or as board observer of a number of venBio companies. Prior to joining venBio, Dr. Gaster served as the head of translational medicine at Pliant Therapeutics. As a key member of the founding management team, Dr. Gaster was instrumental in the formation and launch of Pliant Therapeutics from Third Rock Ventures where he previously served as a Senior Associate.

Dr. Gaster has published numerous articles in top-tier peer-reviewed journals including Nature Medicine and Nature Nanotechnology, holds more than a dozen patents, was awarded first prize in the IEEE Change the World Competition, and was named one of Forbes “30 Under 30” in Science and Healthcare.

Dr. Gaster holds a B.S.E in Bioengineering from the University of Pennsylvania where he graduated summa cum laude and was a University Scholar. He received his M.D. and Ph.D. in Bioengineering from Stanford University in the Medical Scientist Training Program.

On March 1, 2024, my daughter, Claire experienced a seizure. She was diagnosed with a type of brain cancer called AT/RT (atypical teratoid rhabdoid tumor), a highly aggressive grade IV glioma..... tune in for the rest of the story!

You can also get involved with the Gold Ribbon Kids Cancer Foundation or the National Pediatric Cancer Foundation through fundraising, volunteering, promoting awareness, or contributing to pediatric cancer research. Visit goldribbon-kids.org or nationalpcf.org for more information

To contact Tiffany, please email [email protected]
To contact Kelly, please email [email protected]

Support the show

This week, we're thrilled to have Kellyn Simonson join us for an insightful episode. Kellyn, a passionate storyteller and advocate, brings her rich experiences from both her professional and personal life. As a Family Resources Coordinator and a mother who has navigated the challenges of autism and childhood leukemia within her family, Kellyn embodies resilience and hope.

Tune in as we explore her contributions to a book chapter that has inspired many, and discover how her journey has empowered her to support others facing similar battles. Whether you're seeking comfort, inspiration, or guidance, this episode promises to offer valuable insights into overcoming life's hurdles.

https://www.amazon.com/Deserts-Mountaintops-Pilgrimage-Jessica-Buchanan/dp/1958472212

If you want to donate to Gold Ribbon Kids: https://givebutter.com/gold-ribbon-kids-cancer-foundation

to learn more go to:
goldribbon-kids.org
nationalpcf.org

[email protected] - Kelly
[email protected] - Tiffany

Support the show

If you want to donate to Gold Ribbon Kids: https://givebutter.com/gold-ribbon-kids-cancer-foundation

to learn more go to:
goldribbon-kids.org
nationalpcf.org

[email protected] - Kelly
[email protected] - Tiffany

Support the show