National Press Club,Washington, DC

7:15 Registration and Continental Breakfast
Book Signing by Rene Marsh, The Miracle Workers: Boy vs. Beast

7:35 Welcome – Lisa Ward, Co-Founder Tough2gether Against DIPG and Amy Weinstein, PBTF

7:45- 8:15 Keynote:
Pediatric Brain Tumors Across the Board, Many Diagnoses, One Community
Ned Sharpless, MD Former Director of the National Cancer Institute There are over 120 different types of pediatric brain tumors. While diagnoses differ, there are many points of commonality and community. So how do we, in the collective (practitioner and family), identify those common points and focus on them. Going forward from here, how might we also use what we’ve learned in successfully developing new treatments for some cancers to fuel better treatments for all brain tumors? While some brain tumors are fatal and many are not, all are difficult to treat and/or cure. Those which can be cured, still have an incredibly deleterious impact on the children who are diagnosed. To create better outcomes, how might we come together as one community?

8:15 Using Novel Advanced Therapies and Immunology to Treat Pediatric Brain Tumors
After trying for decades to find the right combination of drugs, drug delivery and radiation, new approaches are now within reach. Hear from experts in advanced therapies, neurosurgery and immunology as they discuss how we can best move the needle forward in these novel treatment approaches.
Moderator: Lauren Powlovich, MD, MBA (candidate); Associate Chief Medical Officer; Focused Ultrasound Foundation

  • Gerry Grant, MD, Neurosurgeon; Duke Healthcare – Innovative surgical methods for treatment delivery
  • William Loudon, MD, PhD Neurosurgeon, Children’s Hospital of Orange County – Spotlight on Bionaut proof of concept
  • Lindsay Kilburn, MD Pediatric Neuro Oncology; Children’s National Hospital – Sonodynamic Therapy with ALA & Focused Ultrasound Therapy opportunities for discovery.
  • Jessica Foster, MD Pediatric Neuro Oncology; Children’s Hospital of Philadelphia: A new frontier for a plethora of immunotherapy approaches in pediatric brain cancer.

9:15 Panel Discussion: Evidence-Based Integrative Therapies for Pediatric Brain Tumors: A discussion of best practices in support of patient & family quality of life with personalized integrative medicine”
Moderator: Samantha Chacon, MaxLove Project and Bereaved Brain Cancer Mom

  • Molly Hemenway, CPNP-AC/PC Children’s Hospital of Colorado – The role of medicinal cannabis in quality-of-life care.
  • Nasha Winters, ND, FABNO, Metabolic Terrain Institute of Health, Integrative Oncology – An overview of evidence-informed integrative care for pediatric brain tumor patients.
  • Veronica DeRosa, BSN, CBC, RMT, Pediatric Neuro Oncology, Children’s Hospital of Orange County – Supportive care practices for parent/caregiver mental & emotional health

10:30 – 11:30 -Clinical Trials in the Age of Personalized Medicine
Three esteemed colleagues in the pediatric brain tumor community will share their perspective on the trajectory of clinical trials over the past decade and the shift in the academic setting that has allowed for an increase in clinical trials for this niche disease. The panel will discuss new attention from pharma, and the shift to adapt drug development to smaller populations as precision medicine becomes more commonplace. Finally the panel discusses using gold standard treatment versus targeted therapies as a first line treatment.
Moderator: Colin Raybin, Brain Cancer Mom

  • Susan Chi, MD, Deputy Director of Pediatric Neuro Oncology; Dana Farber Children’s Hospital
  • Roger Packer, MD Pediatric Neurology SVP Neuroscience & Brain Tumor Institute; Children’s National Hospital
  • Mark Kieran, MD PhD, VP Clinical Development; DayOne Biopharmaceuticals

11:30 Panel Discussion: The Parent Role in Advocating for Clinical Trials
The three speakers from the Clinical Trials panel will engage in an interactive question and answer session for families. Topics including: How does a parent talk to a clinician about the potential for a trial? Why are clinical trials important? When is the right time to discuss clinical trials? What if the treatment center doesn’t offer clinical trials or there are trials that are in other institutions that are more appropriate? And much more

  • Susan Chi, MD, Deputy Director of Pediatric Neuro Oncology; Dana Farber Children’s Hospital
  • Roger Packer, MD Pediatric Neurology SVP Neuroscience & Brain Tumor Institute; Children’s National Hospital
  • Mark Kieran, MD PhD, VP Clinical Development; DayOne Biopharmaceuticals

10:30- 11:00 My DIPG Navigator and DIPG DMG National Brain Tumor Board
Explore the newly created patient Informed continuum intended to lead to better treatment protocols and clinical trials using My DIPG Navigator and the DIPG DMG National Brain Tumor Board.

  • Ann Friedholm, CEO ChadTough Defeat DIPG Foundation
  • Nick Vitanza, MD, Pediatric Neuro Oncology, Seattle Children’s Hospital and DIPG DMG National Tumor Board Member

11:00 12:00 Designing a precision approach for complex childhood brain cancers including DMG (and DIPG).
Javad Nazarian, PhD, Children’s National Hospital, Moderator

IPG DMG Preclinical/Translational Research Panel
Moderator: Javad Nazarian

Tumor biology & DMG Vulnerability

  • James Stafford, PhD University of Vermont Larner College of Medicine – Targeting tumor epigenetic drivers using combination therapies
  • Jia-Ray Yu, PhD Fralin Biomedical Research Institute at Virginia Tech Carilion, Children’s National Research & Innovation Campus in Washington, DC. – Understanding the dysregulated chromatin state in DMG/DIPG and developing new pre-clinical strategies against cancer dependency


Emerging opportunities for clinical interventions

  • Eva Mendez, PhD, Chief Discovery Officer, Oncoheroes Biosciences, Drug screening & the case for new pediatric drug discovery
  • Adam Green, MD, pediatric hematologist-oncologist Children’s Hospital of Colorado – TBA XPO1 inhibition in DMG: Preclinical, Clinical, and the Road to Combination Therapy
  • Cheng-Chia Wu, MD PhD Radiation Oncologist, Columbia University – Focused ultrasound technology for treatment of children diagnosed with DMG.


12:00 Session Ends

Lunch Will Be Served During the Program

Celebrating the History of Tissue Donation and Pioneering Parents who Made it Happen
Ginny McLean Outreach and Communications Director, Gift from a Child

Creating a Data Driven Environment Primed for New Discoveries in Pediatric Brain Tumors
Adam Resnick, PhD Co-Director Center for Data Driven Discovery in Biomedicine and Founder
Children’s Brain Tumor Network: Harnessing the power of data for new discoveries

Panel Discussion – Real Time Impact of Tissue on Research
Moderator – Caitlyn Barrett, The Milken Institute, Center for Strategic Philanthropy

  • Jeff Greenfield, MD PhD Neurosurgeon, Weill Cornell Medicine;
  • Brian Rood, MD Pediatric Neuro Oncology, Children’s National Hospital
  • Tab Cooney, MD Pediatric Neuro Oncology, Dana Farber Children’s Hospital
  • Adam Green, MD, Pediatric Hematologist -Oncologist, Children’s Hospital of Colorado

Project Highlight – Taking the Next Step Towards Real-Time Data Analysis to Drive Patient Outcomes

  • Kenneth Harris, Sr. Manager & Head – Academic Medicine at Amazon Web Services
  • Reed Jobs, Managing Director, Emerson Collective

From a Parent’s Viewpoint – Patient Derived Tissue & Data

  • Kristine Wetzel, Co-Founder, McKenna Claire Foundation
  • Patti Gustafson, Co-Founder, Gift from a Child

Shirley Otis Greene, MSW, AV, LCSW
When a family hears the words “your child has a brain tumor,” life is forever changed. Each family member will go through periods of grief and loss. There are changes that will impact the future, including the sports a child used to play, the career you had discussed, the friends who used to always be around, and a parent’s dreams for their child’s future. This session will discuss the changes that only a brain tumor family can understand. It will also allow for space to celebrate the strengths and relationships that have developed as a result of those forever-changing words.

Facilitated by
Shirley Otis Greene, MSW, AW, LCSW,
Stacia Wagner, MSW, President CBTF,
Beth Jones, MPH, Vice President CBTF and
Jenn Kelley, CCLS Family Support Manager PBTF
Life during and after a brain tumor can be lonely. This open discussion will be a chance to share your story, discuss gaps in services and share the wisdom you have gained
5:00 Session End

Age: 4 – 14 year olds who are fighters, survivors or siblings

Heroes Round Up with Leia’s Kids Foundation with Oliver Patch Project (open for ages 4-14)
Inviting all kids ages 4-14 to join Leia Hunt and Brian Burkhardt for fun, encouragement is a two-time childhood cancer survivor, the founder of Leia’s Kids, a dynamic hope spreader and Ted Talk children’s cancer advocate. Brian Burkhardt, dad to Oliver and founder of Oliver Patch Project has a lifetime of experience in uncovering feelings through art and creating. Oliver Patch Project focuses on positivity and bringing smiles during the yuck of a cancer journey. With Oliver Patch Project and Leia’s Kids, the person is encouraged, celebrated for WHO they are without focus on cancer. Leia’s Kids Foundation and Oliver Patch Project, with help from other young adult advocates, will host a party for children whose parents are attending the BrainStorm Summit. Plan to enjoy fun games, art activity, balloon artist, photo fun and lots of laughs. Please register as space is limited.

Registration is Free. Space is limited to 40 children ages 4-14. Register Here:

White House Briefing on Childhood Cancer Watch Party
Join your friends to watch the White House Briefing which will introduce the new NCI Director Dr. Monica Bertagnolli, highlight the activity of the Moonshot Initiative in the Office of Science and Technology, and provide addresses by those connected to pediatric cancer.