Families, researchers, government regulators, and advocates gathered in Washington, DC, on February 13, 2020, for a multi-part event for the DIPG community, organized by the DIPG Advocacy Group. There was an excellent turnout from throughout the country, a powerful example of collaboration and persistence of families who will not stop pushing to do better for the children facing DIPG (diffuse intrinsic pontine glioma).
In the morning, a Congressional Briefing was held to educate Congressional offices and advocate for passage of H. Res. 114, a resolution to support establishing May 17 as DIPG Awareness Day and encouraging greater consideration for pediatric and high mortality-rate cancers in the research grant process with public and private funding sources. We thank Congresswoman Jackie Speier for her support for this important event. There are nearly 100 co-sponsors for the bill to date, but additional support is needed. Following the briefing, attendees gathered for a State of DIPG Summit that involved discussion of hot topics in the community, such as research initiatives, challenges facing patients and families, development of ONC201, the FDA regulatory framework, data-sharing, and advocacy opportunities. A listing of speakers is below.
A highlight of the day was hearing from three patients: young adults who are currently fighting DIPG and DMG (diffuse midline glioma). Jace Ward, Anjalie Bartee, and Katie Bedingfield spoke with strength and passion about the reality for young adults and children fighting this difficult disease. They emphasized the urgency of driving research forward and drawing more attention to the needs of this vulnerable population.
“I can’t promise I’ll be back here next year. Which is exactly why I respectfully ask you to co-sponsor H. Res. 114 before you leave for the weekend. DIPG won’t wait until this is convenient. DIPG won’t wait until we are ready. While we have been ‘waiting’ to take a solid stand, DIPG has been taking the sight, the hearing, the speech, the ability to swallow and eventually the breath of thousands of kids across this country.” — Jace Ward, 21 years old, fighting DIPG since May 17, 2019.
A number of other families in the midst of the fight with their child made an incredible effort to take part in the event, including the Basha family from New York (with Elita in attendance), Halek family from Illinois (with Noah in attendance), and Stacey Sands from Kansas (in honor of Hudson). And there were countless families who carry the heartbreak of losing a child who took part in memory of their precious children. The power of standing together as a united community was palpable.
Michael Mosier Defeat DIPG Foundation was proud to sponsor this event alongside other organizations: The ChadTough Foundation, Dragon Master Foundation, Jack’s Angels Foundation, Julia Barbara Foundation, Smashing Walnuts Foundation, and Team Cozzi Foundation. We thank Covington & Burling LLP for generously hosting the State of DIPG Summit and Akin Gump LLP for supporting the Congressional Briefing effort. We appreciate the hospitality and great food from We, The Pizza, a restaurant owned by The Mendelsohn Family who are steadfast supporters of the fight to Defeat DIPG.
YOU CAN TAKE ACTION
There are two immediate action items where all can contribute to the coordinated efforts to establish May 17 as DIPG Awareness Day, as a catalyst for increased attention to this tragic disease.
Support H. Res. 114 – Federal Recognition
The DIPG Advocacy Group has detailed information on how you can engage with your Congressional representative to urge their participation as a co-sponsor for H. Res. 114. Please visit the DIPG Advocacy Group website for instructions on how to contact the legislator who represents your district, either to request their support or to thank them for signing on to the resolution.
Support “DIPG Across the Map” – State Level Recognition
We call on everyone to use their stories and voice to help get all 50 states to recognize May 17 as DIPG Awareness Day. To sign up for this project, please visit www.defeatdipg.org/dipgacrossthemap. Michael Mosier Defeat DIPG Foundation organizes this project – a collaboration of foundations and individuals throughout the country – as a companion effort to our federal efforts. We will provide step-by-step instructions and materials to assist in advocating within your state. In 2019, 32 states recognized May 17 as DIPG Awareness Day. We hope to increase that number in 2020, with the collective effort of the DIPG Community.
Congressional Briefing Speakers
Janet Demeter (Jack’s Angels Foundation), Sabine Mueller (University of California San Francisco and [zurich]), Adam Resnick (Children’s Hospital of Philadelphia and Children’s Brain Tumor Tissue Consortium), Charles Keller (FILL IN), Malcolm Smith, David Arons (National Brain Tumor Society), Jace Ward (DIPG patient), Jenny Mosier (Michael Mosier Defeat DIPG Foundation), Elizabeth and William Psar (Julia Barbara Foundation, and Jill, Cam, and Phebe Morin (Luke’s Posse). Video available at this link.
State of DIPG Summit Speakers
Mark Mosier (Michael Mosier Defeat DIPG Foundation), Janet Demeter (Jack’s Angels Foundation), Elizabeth Psar (Julia Barbara Foundation), Paul Miller (advocate), Jenny Mosier (Michael Mosier Defeat DIPG Foundation), Sabine Mueller, MD, PhD (University of California San Francisco and [zurich]), Eugene Hwang, MD (Children’s National Hospital), Carl Koschmann, MD (University of Michigan), Paul Cozzi (Team Cozzi Foundation), Katie Gaskin (Anthony’s Avengers Defeat DIPG Foundation), Anjalie Bartee (patient), Katie Bedingfield (patient), Wolfgang Oster, MD, PhD (Oncoceutics), Amanda Haddock (Dragon Master Foundation), Adam Resnick (Children’s Hospital of Philadelphia and Children’s Brain Tumor Tissue Consortium), Gregory Reaman, MD (U.S. Food and Drug Administration), Jonathan Agin (Max Cure Foundation, Oncoheroes Biosciences), Danielle Leach (National Brain Tumor Society), and Jace Ward (patient). Video available at this link.