September 20, 2024
Mayflower Hotel, Washington, DC
Grand Foyer –
Please visit our sponsor booths!
CHINESE BALLROOM
Spotlight: New Compounds of Discovery: Learn more from FLAG Therapeutics and Targetpeutics, Inc. about compounds just on the verge of clinical trial adoption. These are compounds that with funding made available are ready to enter DIPG/DMG clinical trials.
SOUTH CAROLINA ROOM
Tough2gether Founding Families Meeting. If you are a Tough2gether Founding Family or want to get involved in Tough2gether join us – all families are welcome; we are particularly a good fit for those who do not have their own non profit foundation — Tough2gether was founded in DIPG, BUT has efforts fighting ALL pediatric cancers; Meeting also available through Handzin live link
RHODE ISLAND ROOM
CAC2 Informational Session. Heard the term CAC2 but are not sure what it means? Know of the good work in our community CAC2 is doing? Come find out how you can join the collaborative team as an individual or non-profit to advocate, support families, fund research and so much more! Hear from the CAC2 leadership and ask your questions in an informal setting.
Welcome and Introduction – Grand Ballroom
GRAND BALLROOM
Platform Trials: Weighing the Benefits and Challenges
This session explores the benefits and challenges of platform trials for childhood brain cancers, discussing their potential to accelerate research through simultaneous evaluation of multiple treatments while addressing implementation, statistical, regulatory, and ethical considerations.
Presented by:
Dr. Nicole Drezner, CDERS – FDA; moderator
-Dr. Mark Kiernan, Day One Biopharmaceuticals
– Dr. Cassie Kline, MD, Children’s Hospital of Philadelphia
– Dr. Eugene Hwang, MD, Children’s National Hospital
– Dr. Farahnaz Forozan, PhD, NKORE Chief Scientific Officer
– Dr. Ashley Margol, MD, MS, Children’s Hospital Los Angeles and an Assistant Professor of Pediatrics at the Keck School of Medicine at the University of Southern California
CHINESE BALLROOM
Using Your Unique Voice to Advocate Presentation
Join CAC2 advocay leaders to adapt your elevator pitch and arm yourself with facts that matter. – The grinding gears of bureaucracy – The State Cancer Action Plan and Talking to state legislatures – getting research dollars carved out.
Presented by:
– Ginny McLean, Board Chair, CAC2 / Program Director Gift from a Child
– Ann Ramer
– Bobbi Krabill
– Aubrey Reichard -Eline
– Leia Hunt, Leia’s Kids Foundation
SOUTH CAROLINA ROOM
Overview of Healing Support
Maybe I do need therapy? But what kind do I need? An overview of types of grief support and how to choose what is best for you and your family.
Workshop by
Salliann Schippers, licensed therapist and bereaved parent.
KEYNOTE: The Neuroscience of Brain Cancers Exploring the role of neuronal activity and neuron-glioma interactions in glioma progression reveals crucial mechanisms that highlight potential therapeutic targets and underscore the importance of understanding the neuroscience of brain cancer.
Dr. Michelle Monje, MD PhD, Stanford University
SOUTH CAROLINA ROOM
RHODE ISLAND ROOM
Small Group Writing Workshop Join us to discover how writing can be a powerful therapeutic tool for processing profound emotions that accompany caregiving and grief. We will explore ways to help you start your writing journey, provide resources and an opportunity to try a simple writing exercise—no prior writing experience required, and sharing your work is completely optional.
Hosted by:
Stacy Remy, Licensed Mental Health Counselor, Author, Tough2gether Foundation
– Kristy Wallmo, Author
– Leanne Friesen, Author, Grieving Room
– Ginger Bliss
9:15 – 10:00. The Mayflower Hotel – An Indoor Walking Tour: If These Walls Could Talk — History Made at the Mayflower Hotel by Hotel Historian Kevin Murphy
Sponsored by The Morgan Adams Foundation
CHINESE BALL ROOM
Advanced Topics in Detection and Monitoring Techniques This session examines innovative methods for detecting and monitoring pediatric brain cancers, focusing on advancements in liquid biopsy, proteomics, and advanced imaging, and their potential for comprehensive, real-time tumor monitoring during treatment.
Presented by:
– Dr. Javad Nazarian, PhD, University of Children’s Hospital in Zurich
– Dr. Alexandra Miller, MD, PhD, NYU Grossman School of Medicine
– Dr. Amanda Paulovich, M.D., Ph.D., Fred Hutchinson Cancer Center and University of Washington School of Medicine
SOUTH CAROLINA
What About Dads? A Session devoted to Our Dads on Healing –
Hosted by:
Joe McDonough, Facilitator and founder of B+ Foundation
– Jon Wall, Tyler Moore, Tough2gether Foundation
– Brock Remy, Tough2gether Foundation
RHODE ISLAND
The Case for A Seamless Delivery of Family Financial Support – A discussion of challenges & ideas to streamline. All too often after receiving a pediatric brain cancer diagnosis, the family is on their own to find clinical trials which may be far from home. Perhaps the child or young adult diagnosed needs full-time care, making keeping a job and health insurance nearly Explore with this panel ways foundations are making the path to resources easier, faster, and more comprehensive. Dive into the changes needed to really help families.
Presented by:
– Raegen Sieck, LiveBrave2gether
– Jordan Arogeti, Support Now
– Robin French, The Morgan Adams Foundation
– Heather Roy, BHS,Team Evelyn Foundation
11:40 Program Start
Lunch: Building Blocks of Patient-Centered Learning.
Introduction by Lisa Ward, JD, Tough2gether Foundation
Sponsor presentation by DayOne BioPharmaceuticals
Presentation by Brad Powers, MBA, Cancer Hacker Lab
Panel Presentation moderated by Dr. Misha Mehta, PhD, Neev Kolte Brave Ronil Foundation;
Panelists:
Dr. Mark Kiernan, Day One Biopharmaceuticals
Dr. Michelle Monje, MD, PhD; Stanford University
Dr. Tim Stuhlmiller, PhD; xCures
Dr. Javad Nazarian, PhD, University of Children’s Hospital in Zurich
Dr. Amanda Paulovich, M.D., Ph.D., Fred Hutchinson Cancer Center and University of Washington School of Medicine
Dr. Marty Tennenbaum, PhD, Cancer Commons
Dr. Martha Donahue MD, Associate Director of Pediatric Oncology and Rare Cancers FDA
Brad Powers, MBA, Cancer Hacker Lab
Lisa Ward, JD, Tough2gether Foundation
Dr. David Korones, MD, Pediatric Neuro-Oncologist/Palliative Care, University of Rochester
Sponsored By:
GRAND BALL ROOM
Advanced Topics in Cancer Immunotherapy This session examines recent advancements in immunotherapy for childhood brain cancers, focusing on CAR T-cell therapy, highlighting promising results and challenges in translating these innovative treatments to pediatric patients.
Moderated by Dr. Jessica Foster, MD, PhD Children’s Hospital of Philadelphia
– Dr. Michelle Monje, MD, PhD, Stanford University and a Howard Hughes Medical Institute Investigator
– Dr. Sujatha Venkataraman, PhD, University of Colorado Denver
– Dr. Dalia Haydar, Pharm.D., Ph.D, Children’s National
CHINESE BALL ROOM
Applying the Lessons from the Grieving Room: A Workshop Reflections, interactive discussions and practices
Workshop by Leanne Friesen, Author, Grieving Room
SOUTH CAROLINA ROOM
So You Want to Start a Childhood Cancer Nonprofit?
Facilitated by Sandra Price
You are excited, a little nervous but feel called to this work. There is no one-size-fits-all model. Those on this panel have been in your shoes. We share the legal, accounting, marketing, programming, and event tips we have learned as well as explore standalone, partner-based, or national foundation models with you. Come away with tips, connections, and above all knowing that there is room for you in pediatric cancer advocacy. Sandr Price, your moderator and consultant to businesses and nonprofits focuses the conversation to explore behind the scene challenges you can’t ignore.
Founders:
– Lisa Ward, President, Tough2gether Foundation
– Mina Carroll, President; Storm the Heavens
– Jenn Capshaw, Magic for Maddie Foundation and
– CEO Ann Friedholm, ChadTough Defeat DIPG Foundation
Break Sponsored by:
GRAND BALLROOM
Using AI for New Discoveries in Pediatric Brain Cancer
This session examines the transformative potential of artificial intelligence in pediatric brain cancer diagnostics, exploring its applications in molecular profiling and imaging analysis to improve patient outcomes.
Moderated by Scott Glasser, AWS.
Panel
– Dr. Javad Nazarian, PhD, University of Children’s Hospital in Zurich
– Dr. Panna Sharma, CEO of Lantern Pharma and Starlight Pharma
– Prof. Orly Alter, PhD, University of Utah and Prism AI Therapeutics, Inc.
– Dr. Arianna Familiar, PhD, D3b and CBTN, Children’s Hospital of Philadelphia
– Dr. Sarah Brueningk, PhD, ETH Zurich
CHINESE BALLROOM
This is Hard, This is Hope
A very Special Session focusing on parents, spouses and other caretakers in the fight now.
Stacy Remy, Christine Kelly-Clark, Jen WaIl and Lisa Ward explore the importance of finding peer support to address anticipatory grief. Is it even possible to know what to ask for while finding your footing? Find the resources you need for you, your partner and your children here.
Stacy Remy, Moderator, Licensed Mental Health Counselor, Author; Tough2gether Foundation
– Christine Kelley-Clark, Tough2gether Foundation
– Jen Wall, Bereavement Coordinator
– Leanne Friesen, Author
SOUTH CAROLINA ROOM
Session on Comfort Eating, Grief Drinking, Retail Therapy
When do our escapes from pain lead to addictions ?
Salli Schippers will discuss the ways that our maladaptive coping skills can complicate our grief and offer strategies for healthy alternatives.
Facilitated by:
Salliann Schippers, Licensed Clinical Social Worker
SPOTLIGHT in the Rhode Island Room
Support Now
BubleUp
Handzin
SUPPORT NOW SPOTLIGHT, BUBLUP SPOTLIGHT, and HANDZIN
GRAND BALLROOM
Clinical Trial Overview This session offers an overview of current pediatric brain cancer clinical trials across major research networks, highlighting collaborative efforts, innovative approaches, and ongoing challenges in improving patient outcomes.
Moderated by Dr. Cassie Kline, MD, Children’s Hospital of Philadelphia
– Dr. Lindsay Kilburn, MD Children’s National Hospital
– Dr. Michelle Monje, MD, PhD Stanford Hospital
– BrandiLee Swayer, Patient Care Coordinator First Ascent Biomedical
CHINESE BALLROOM
Creating Space to Remember Your Child – This session offers roundtable discussion groups on a variety of ways to honor and remember your child..
Moderated by Lynda Poole, Tough2gether Foundation
– Kristy Wallmo, Author
– Sharon & Anthony Kahn,Elora J. Kahn Foundation
– Lisa and JB Purdue, Tough2gether Foundation
SOUTH CAROLINA ROOM
The Art of Acknowledging, Accepting and Moving Forward with a Pediatric Cancer Diagnosis
Moderated by Jessica Schulte, MD, UC – San Diego
– Leia Hunt, Childhood Cancer Survivor, Leia’s Kids Foundation
– Rachel McCollum, Childhood Cancer Survivor
– Jen Thomas, Childhood Cancer Survivor
– Randy Craig, Battling DMG
– Seana Isaac, Battling DIPG
EVENING OPTIONS
5:00 – 7:00 CureFest Welcome Party on Freedom Plaza
Everyone is invited to attend the Welcome Party hosted by CureFest for the entire family
CAC2 and Alliance Welcome Reception and Awareness Celebration – Members Only
6 p.m. to 8 p.m. ROYAL PALM BALLROOM
Hosted by the Alliance for Childhood Cancer & the Coalition Against Childhood Cancer
6:30 – 10:30 BRAINSTORM SUMMIT FAMILY NIGHT
Hosted by Noah Halek Strong, Tough2gether Foundation & Anthony’s Avengers at Astro Beer Hall, 1306 G. St. NW, Washington DC 2005 for DIPG and DMG families serving the famous Astro Chicken and Doughnuts with old fashioned arcade games.
7:00 – 10:00 CureFest Teen & Young Adults
Bus leaving JW Marriott to Pinstripes in Georgetown for bowling, video games, food and fun; Registration through www.CureFestUSA.org is required
