JW Marriott Hotel

Tough2gether Against DIPG Breakfast
Shining Their Light, Leading our Way
Saturday, September 24th – JW Marriott Hotel

8:00 Registration and Coffee Connection
Please enjoy our sponsor booths and posters of our children and foundations. Rene Marsh, bereaved cancer mom, journalist and author will be signing her book, The Miracle Workers: Boy vs. Beast

8:25 Welcome – Mina Carroll
Recognizing our honored guests in attendance
Sponsor videos and powerpoints of children will continue during the breakfast buffet line

9:00 Inspired by Their Light – John Sorenson, DIPG Advocate perspective

  • Celebrating our Fighters – Sandy Barker, Founder Gold Rush Cure Foundation
  • New Marc Jr. Foundation Travel to Trials Family Support Network – Jill Morin, Founder, Luke’s Posse
  • Legislative Update – Ellyn Miller, Founder Smashing Walnuts Foundation
  • From My Perspective – Londyn Buss, age 13 and DIPG Fighter with mom Jessica Buss
  • Car T Cell Therapy lessons in progress – Nick Vitanza, MD, pediatric neuro-oncologist and translational scientist
  • MyDIPGNavigator.org – Jenny Mosier, Co-Founder ChadTough Defeat DIPG
  • Supporting Young Scientists in the Field – Jenny Mosier, Co-Founder ChadTough Defeat DIPG
  • Research Spotlight Cell Microenvironment:
    • Anna Geraghty, PhD and Michelle Monje, MD, PhD (by video) –
  • Light With Just One Spark – Leading the Way with Advocacy and Support– Alison Hornung, Co-Founder Glimmer of Hope and Lily McKinstry, brain tumor fighter and advocate –
  • Clinical Trials from a parent perspective – Jennifer Thompson, Co-Founder, Warrior Jace Foundation
  • Clinical Trials for DIPG DMG, what’s open & what’s coming – Lindsy Kilburn, MD; pediatric neuro-oncologist and pharmacologist , Children’s National Hospital –
  • Mining Real Time Data & Adjusting Clinical Trials – DMG ACT – Javad Nazarian, PhD, Children’s National Hospital –
  • DDRFA grant awards – TBA.. Mina Carroll, Lisa Ward and __
  • Light it Up! Until DIPG Doesn’t come with a LIfe Sentence: We Stay Busy – Lisa Ward, Co-founder, Tough2gether against DIPG

11:00 – 11:40Connection Time continues around posters

12:15 DIPG DMG Research Funding Alliance Members (DDRFA) are Invited to
DDRFA Luncheon & Annual Meeting in Salon III & IV
(Join DDRFA by September 21 to participate (www.ddrfa.org)

8:00 Coffee Service and Registration begins
Please enjoy our sponsor booths and bereaved brain cancer mom, journalist and author Rene Marsh who will be signing her book, The Miracle Workers: Boy vs. Beast

8:30 Survivorship Breakfast Line Opens
9:00 Welcome by Stacia Wagner, MSW, President CBTF
9:15 Medical Follow-up and Transitioning to Adult Care

The panel will discuss the importance of a comprehensive treatment summary, medical late effects (common and uncommon), and what you need to know about the transition from pediatric to adult care

  • Roseann Tucci, NP Adult Long Term Follow Up Program at Memorial Sloan Kettering and
  • Michael Muldoon, survivor and MSW at Inova

10:30 Roundtable Discussions
Discussion topics will include Complementary Therapies, Impact on Siblings, Finding Yourself for Survivors, Parenting Gems and Challenges. Families will have the option to attend two tables (30 minutes each) during this time to meet with others and share perspectives.

11:30 Closing

Tough Together Against DIPG/DMG 2nd Annual Breakfast – Presenting Sponsors