September 22, 2023
JW Marriott, Washington, DC
Grand Foyer – JW Signature Continental Breakfast (with GF Blueberry muffins as well)
Please visit our sponsor booths!
7:00 – 12:00 Registration Grand Foyer
7:30 – 9:00 Continental Breakfast – Grand Foyer
Welcome and Introduction – Salon II
Research Program Chair – Misha Mehta, Neev Kolte & Ronil Brave Foundation
Program Committee – Lauren Powlovich Focused Ultrasound Foundation,
Keynote Presentation – Salon I/II
Praveen Raju, MD, PhD, Mt Sinai Children’s Hospital
Overcoming Translational Hurdles for Pediatric Brain Tumors – The Elephants in the Room
The pediatric brain tumor field has made great strides in improving outcomes for children with certain types of tumors, however for many other tumor types, very little progress has been made over the past several decades despite efforts by clinicians and researchers and the advocacy of parents. Importantly, even with ‘success’ in improved outcomes for children with certain pediatric brain tumors, this has often come at the expense of the toxicity and side effects of current therapies on the developing brains and other organ systems in kids. We as a community need to do better!
9:00 – 9:50 – Salon II
FEATURED Family Support Speaker:
Psychological & Biobehavioral Outcomes to Families Confronting Pediatric Brain Tumors
Dr. Victoria W. Willard, PhD, St. Jude Children’s Research Hospital
Survivors of pediatric brain tumors may struggle with social and emotional difficulties after treatment. Various challenges may include emotional problems like anxiety and depression, as well as social concerns such as difficulties making friends or dating. This talk will review the current research on social and emotional late effects in survivors of pediatric brain tumors, as well as discuss practical strategies for coping with them.
9:00 – 9:50 – Salon – H&J
The Patient’s Role in Data Discovery
Moderator: Sarva Channarajurs, Co-Founder Mithil Prasad Foundation, DDRFA member communications coordinator
Presentations by:
Olena Vaske, PhD Treehouse Childhood Cancer Initiative
Ripley Martin, patient advocate
Dr. Ashley Margol, MD ATRT Registry
Lisa Ward, JD Tough2gether Foundation, patient advocate
Q & A Session with panel
In our “Patient’s role in data discovery” session we delve into the evolving landscape of healthcare data discovery. In this session, we will cast a spotlight on the pivotal role patients play in the journey of uncovering valuable insights from their own health data. Discover how the research landscape is being transformed with the help of patient’s data. We will explore innovative strategies, ethical considerations, and the potential for patient-centered data discovery to reshape the way we find new and novel treatment options. You will hear from researchers, patient advocates, and industry partners. There will be demos of tools from CCDI, Xcures.
Sponsored by The Morgan Adams Foundation
Continuous Break – Foyer: Coffee, Water, Tea, Make Your Own Trail Mix
10:05 – 10:55
Salon II
Voices and Resources for Survivors and Siblings
Noelle Gonzales Jackson, Sibling and Advocate, moderator
Stacia Wagner, CEO, CBTF
Dr. Victoria W. Willard, MD PhD, St. Jude Children’s Research Hospital
Sophia Posner Brown, Survivor and advocate
Jessica Posner, advocate and mother of survivor
Sahil Mehta, Bereaved Sibling
10:05 – 10:55
Salon H, J
Advanced Therapies Using Omics
Dr. Adam Resnick, PhD, D3B, CBTN, moderator
Dr. Carl Koschmann, MD PhD, Univ of Michigan
Jay West, PhD Bioskryb Genomics
Justin Guinney, VP Cancer Genomics, Tempus
Dr. Amanda Paulovich, MD PhD, Fred Hutch
Pediatric Brain Tumors are one of the most challenging areas of research and therapeutic development. The emergence of new multimodal technologies and data are providing new ways for scientists and clinicians to diagnose and understand how cancer develops and resists therapies for improved novel and personalized treatments.
10:05-10:55
Salon K ( no livestream)
Palliative Care & Hospice
Listening Session: Is it time for better best practices?
Dr. Lindsay Kilburn, MD Children’s National Hospital
Dr. Robin Gartrell, MD Columbia University
Dr. Melissa Mark, MD – Pediatric Hemotology/Oncology and Hospice/Palliative Care, Children’s Hospital of The King’s Daughters
Emily Rutt, CPNP-AC, MSN, RN, CHPPN ACHPN, My DIPG Navigator
Jessica Buss, bereaved parent
Amanda DeCicco, bereaved parent
10:55 – 11:25
Demos:Patients Role in Data Discovery
Salon H & J
Tim Stuhlmiller, PhD xCures
Concerning xINFORM and xDECIDE
Peter Gilbertson, MD, from Childhood Cancer Data Initiative, NCI
Childhood cancer data platform (remote)
10:55-11:25
Asserting your Independence and Using Your Voice for Young Adults
Salon K
Nicole Puglisi, moderator
Stacia Wagner, CEO, CBTF
To Disclose or Not: The ins and outs of educational and career advocacy
Ethan Schilling, PhD and survivor
The changes you can see and the ones you can not see following a brain tumor diagnosis and its treatment may cause changes in the way you learn, the best environment for you to learn in and your social skills. This also leads to changes in career plans and strengths.
Is Patient Advocacy the Secret Sauce to Combating Childhood Brain Cancer
Welcome & Recognition of our Sponsor:
Secret Sauce in the Making – What Ingredients Honed this Special Recipe for Advocacy –
Dean Crowe, CEO, Rally! Foundation
The Making of the Secret Sauce – Key Patient Advocacy Led Milestones
Ashwini Davison, MD, Amazon Web Services
Patient Advocacy: The Secret Sauce Causing Change for Good
A panel discussion moderated by
Caitlyn Barrett, PhD, Milken Institute Health & Science Philanthropy
- Greg Reaman, MD, Scientific Director, Childhood Cancer Data Initiative, National Cancer Institute
- Catharine Young, PhD Assistant Director, Cancer Moonshot
- Christa Kerkorkian, Vice President, Patient Advocacy, Day One Biopharmaceuticals
- John Lee, Government Affairs, Legislative Director for Congresswoman Nikki Budzinski (D-IL)
- Randy Tan, Sales Director, Global Public & Social Impact, Slalom
Lisa Ward JD, Tough2gether Foundation, patient advocate
Pour on the Sauce – Harnessing the Power We Have to Change Pediatric Brain Cancer as We Know It
Lunch Will Be Served During the Program
Wild Mushroom Soup, Herb Marinated Chicken or Vegetable Strudel and Key Lime Dessert
Thank You to Our Sponsor
1:10 – 2:05 Innovative Trial Design
Salon II
Dr. Sabine Mueller, MD PhD, UCSF Benioff Children’s Hospital, moderator
Dr. Elias Sayour, MD PhD, University of Florida
Dr. Nicole Drezner, MD FDA CDERS
Dr. Yevgen Tymofyeyev, PhD, Janssen RD of J&J
Dr. Tab Cooney MD, Day One Biopharmaceuticals
Sarah Foster, MPH, University of Louisville
Innovative clinical trial designs are essential for advancing medical research and improving the efficiency of drug development. Traditional clinical trials follow a standardized, three-phase approach: Phase I for safety, Phase II for efficacy, and Phase III for confirmation. However, there are several innovative clinical trial designs that aim to address various challenges and optimize the drug development process.
1:10 – 2:00 Working Through Grief of Bereavement
Salon H & J
exploring types of emotional therapy, healing the body and finding support
To be Announced.
Coffee Break in Foyer – Sponsored by the Super Sam Foundation
Popcorn cones, ice cream novelties, hummus combo, cupcakes; tea, water, coffee, Pepsi products & LaCroix
.2:15 – 2:50
Roundtable Discussions I
Salon II (keep tables)
Resources for helping Families in fight- Live Brave 2gether, BORN- Sandeep Kolte, Neev Kolte & Brave Ronil Foundation, WiTT Rahul Mahadevan and Lori Evans, Noah Brave Foundation and Summer Stumpf
2:50 – 3:30
RoundTable Discussions II
PICK BETWEEN 3, 4 and 5
3. Demo new Tough2gether online Childhood Cancer community – Brooke Ward. Tough2gether Foundation and Mike Galvin, Handzin
4. Families in the Fight – Opening Up about What’s Hard – Rebecca Handley, En Pointe for Ava Foundation, Leslie Jared, My DIPG Navigator and Jenn Kelley, PBTF
5. Researcher/Industry Matchup – John Ligon, University of Florida, Kelli Wright, Associate Director, Patient Advocacy, Day One Biopharmaceuticals
| 2:05 – 3:00 Cancer Moonshot Childhood Cancer Forum Watch Party Salon H & J (No live feed) The Cancer Moonshot hosts the annual forum for issues impacting Childhood Cancer. We will watch the livestream as members of the Childhood Cancer community bring forward issues and possible solutions to address the challenges of childhood cancer as we know it Hosted by Roger Ward, Tough2gether Foundation and Andrea and Marc Mize, ChadTough Defeat DIPG |
2:15 – 3:15
Grieving of Self & Choosing to LIVE Life following a Brain Cancer Diagnosis
Salon K (no live feed)
Nicole Puglisi, Moderator
Michael Muldoon advocate & survivor
Lily McKinstry advocate & survivor
Grace Wethor advocate & surivor
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. at JW Marriott
Hosted by the Alliance for Childhood Cancer & the Coalition Against Childhood Cancer
7:00 – 11:00 DIPG/ DMG Annual 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 Sightseeing Trolley Tour and Game Night
