Researchers, Advocates, and Families Gather for Congressional Briefing & Summit for DIPG Awareness Day

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). 

Jenny Mosier, Dr. Sabine Mueller, Dr. Eugene Hwang, and Dr. Carl Koschmann

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.

Jace Ward, Katie Bedingfield, and Anjalie Bartee

“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.

Katie Gaskin, Stacey Sands, and Antonio Halek

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.

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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.

Defeat DIPG, ChadTough Award $2.8 Million for Ten New DIPG-Specific Research Projects

Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation are funding ten new Diffuse Intrinsic Pontine Glioma (DIPG)-specific research projects totaling more than $2.8 million over the next three years (2020-22).  Two of the new grants will be made in partnership with SoSo Strong Pediatric Brain Tumor Foundation.

To date, the Defeat DIPG ChadTough grant program has committed $6.1 million to 23 DIPG research projects.  In addition, Defeat DIPG and ChadTough have committed $600,000 to help fund an innovative collaboration between PNOC (Pacific Pediatric Neuro-Oncology Consortium) and the DIPG Centre of Expertise in Zurich, supporting preclinical and clinical work across multiple institutions.

“By working together, we are amplifying our capacity to make significant investments in DIPG-specific research,” says Defeat DIPG Executive Director Jenny Mosier. “It is the generosity, passion, and commitment of the Defeat DIPG and ChadTough supporter networks that propel our shared mission of finding a cure for this devastating disease.”  

The ten projects to be funded (listed below) include:  two research grants ($600,000 over three years), four new investigator grants ($250,000 over two years), and four fellowships ($150,000 over two years).

Jason Carr, President of The ChadTough Foundation, explains, “Our grant program is designed to push the field forward by investing in research that is likely to fuel progress and add to our understanding of this disease, while also ensuring we empower the next generation of researchers to bring this over the finish line for our children.  We hope for a cure in the near term, but we realize we need a pipeline of researchers who have the expertise and drive to follow through with this work as long as needed”

Defeat DIPG ChadTough Fellow Eshini Panditharatna,
Dana-Farber Cancer Institute
Photo by: Dana-Farber

All projects for the Defeat DIPG ChadTough grant program are reviewed by the Defeat DIPG Scientific Advisory Council, an unparalleled group of experts in pediatric brain cancer who evaluate each application for scientific merit.  “Our Scientific Advisory Council brings a breadth of experience and expertise that sets our grant program apart,” says Mark Mosier, Chair of the Defeat DIPG Board of Directors. “Their rigorous review of the many applications we receive ensures we are using donor funds as efficiently and effectively as possible.”

The Defeat DIPG Scientific Advisory Council is chaired by Suzanne Baker (St. Jude Children’s Research Hospital) and includes David Ashley (Duke University School of Medicine), Oren Becher (Northwestern University’s Feinberg School of Medicine), Cynthia Hawkins (Hospital for Sick Children), Duane Mitchell (University of Florida College of Medicine), Michelle Monje (Stanford University), and Javad Nazarian (University Children’s Hospital Zurich, Children’s National Medical Center).

The Defeat DIPG ChadTough grant program was structured with guidance from the Defeat DIPG Scientific Advisory Council to ensure the grant amount, duration, and criteria were shaped to achieve the most meaningful results to push the field forward.  All of the Defeat DIPG ChadTough grants are multi-year grants, allowing researchers to spend more of their time in the lab and less seeking additional funding for future years.  Researchers submit progress reports to ensure the studies are proceeding as anticipated.

Defeat DIPG and ChadTough bring together 11 families with children who have fought or are fighting DIPG that are actively raising research dollars.  

“We are grateful for the opportunity to work together with this incredible set of families who contribute so much,” says Tammi Carr, Co-Founder and Board Member of The ChadTough Foundation, “They have all been through such a difficult experience with their own child’s battle, yet they harness their grief and passion to make a difference for families who will face DIPG in the future.”

Michael Mosier Defeat DIPG Foundation is led by co-founders Mark and Jenny Mosier, and includes their Defeat DIPG Network chapters:  Katie Gaskin and Ruben Cardoza (Anthony’s Avengers Defeat DIPG Foundation (IL)), Amanda and Brandon Huffman (Avery Huffman Defeat DIPG Foundation (WA)), Alexisand Peter Olympia (Connor Man Defeat DIPG Foundation (TX)), and Katie and Simon Weaver (Vivian Rose Weaver Defeat DIPG Foundation (WA)).

The ChadTough Foundation is led by co-founders Jason and Tammi Carr, and includes partner families Gina Hatzivasilis and Sam Reinhold (Team Benjamin) Connie and James Jones (Team Carter), Jeff and Shannon DelVerne (Team Colt), Brad and Nettie Boivin (Team Julian), and Tom and Amanda Ruddy (Team Tommy).

SoSo Strong Pediatric Brain Tumor Foundation is a nonprofit established in honor of Sophia Ann Myers and is co-funding two of the ten grants awarded in this grant cycle.

Learn more about The ChadTough Foundation at chadtough.org and Michael Mosier Defeat DIPG Foundation at defeatdipg.org.

RESEARCH GRANTS

  • Hideho Okada, University of California San Francisco, “Next-generation CAR T cell therapies for treatment of DIPG, utilizing sequential “prime-and-kill” circuits to achieve safe and effective tumor targeting”
  • Daphne Haas-Kogan, Dana-Farber Cancer Institute, “Dependence of DIPGs on DNA polymerase q for DNA repair defines a new therapeutic target”

NEW INVESTIGATOR GRANTS

  • James Stafford, University of Vermont, “Onc201 in DIPG; establishing mechanism, enhancing efficacy and determining long-term phenotypic consequences.”
  • Zachary Reitman, Duke University, “Enhancing the efficacy of radiation therapy for DIPG”
  • Stephen Mack, Baylor College of Medicine, “Interrogating the Role of HERV Activation in H3K27M Pediatric Glioma.”
  • Matthew Dun, University of Newcastle (Australia), “Unlocking oncogene addition to identify synergistic treatment targets for the treatment of DIPG.”

FELLOWSHIPS

  • Eshini Panditharatna, Dana-Farber Cancer Institute, “Targeting epigenetically induced vulnerabilities in DIPG.”  (Mentor:  Mariella Filbin)
  • Chan Chung, University of Michigan, “Targeting DIPGs by interrupting metabolic pathways.”  (Mentor: Sriram Venneti)
  • Alan Jiao, Boston Children’s Hospital, “Dissecting mechanisms of H3K27M oncohistone function in DIPG)  (Mentor: Yang Shi)
  • Xu Zhang, Columbia University, “Mechanistic studies on the WNT5A signal pathway in DIPG tumor.”  (Mentor: Zhiguo Zhang)

Defeat DIPG, ChadTough Announce $3.4 Million in New DIPG Research Funding

Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation, and their chapters and partner families, are thrilled to announce the funding of 11 new DIPG-specific research projects totaling $3.4 million over the next 3 years. This brings the total research dollars committed through the Defeat DIPG ChadTough partnership to more than $6.7 million in the past 3 years. Two of the new grants will be made in partnership with SoSo Strong Pediatric Brain Tumor Foundation.

The foundations will share more details on these new projects in the upcoming weeks. This round of funding includes $2.8 million through the Defeat DIPG ChadTough research program to fund: two research grants ($600,000 over three years), four new investigator grants ($250,000 over two years), and four fellowships ($150,000 over two years). All projects are reviewed by the Defeat DIPG Scientific Advisory Council, a preeminent group of experts in the field.

Defeat DIPG and ChadTough are also providing over $600,000 for an innovative new collaboration through PNOC (Pacific Pediatric Neuro-Oncology Consortium) and the DIPG Centre of Expertise in Zurich, to support preclinical and clinical work across multiple institutions to move combination therapies for DIPG into the clinic. 

We are pleased to make this announcement on behalf of all of our valued Defeat DIPG Network chapters: Anthony’s Avengers Defeat DIPG Foundation (IL), Avery Huffman Defeat DIPG Foundation (WA), Carson Hall Defeat DIPG Foundation (KS), Connor Man Defeat DIPG Foundation (TX), and Vivian Rose Weaver Defeat DIPG Foundation (WA).  We are also very grateful to work with the ChadTough partner families, Team Tommy (the Ruddy family), Team Juliam (the Boivin family), Team Colt (the DelVerne family) and Team Carter (the Jones family). 

We thank all of our supporters who make this important researching funding possible. It is because of your generous contributions that we are making progress towards finding a cure.

Defeat DIPG Raises Over $230,000 for DIPG Research on #GivingTuesday

Thanks to our amazing Defeat DIPG supporters, we raised over $230,000 (and counting) for DIPG research on #GivingTuesday. We started #GivingTuesday, a global day of giving on December 3, with a goal of raising at least $150,000 for DIPG research. In the afternoon, we were very grateful to get another $20,000 in matching dollars to increase our overall goal to $190,000.

But our amazing Defeat DIPG community was not done there, and we exceeded our goals!

Thank you to the Rives FamilyDARCARS Automotive GroupSoSo Strong Pediatric Brain Tumor FoundationTough Like Jack Foundation, and the William & Mildred Kaplan Charitable Foundation for committing matching funds to make our #Give2DefeatDIPG initiative possible. 

Thank you to all of the DIPG families and supporters who created fundraisers to support this effort. We had over 55 Facebook fundraisers created to support the #Give2DefeatDIPG initiative on Giving Tuesday, in honor of dozens of different children who have fought DIPG.

All members of Defeat DIPG® Network offer you our deepest appreciation for your support, not only on Giving Tuesday but all year long. You donate, volunteer, attend events, and so much more. It is all of these contributions combined that allows Defeat DIPG® Foundation to grow and meet our mission: funding research for a cure for the deadliest childhood brain cancer, DIPG.

We are not yet at the finish line, but we are getting there faster because of you. 

Together, we will Defeat DIPG.

Northwestern University’s Dr. Chen Shen Studies How ATRX Mutation Affects DIPG

Dr. Chen Shen

Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation, with our chapters and partner families, have partnered to fund more than $3.3 million in Diffuse Intrinsic Pontine Glioma (DIPG) research grants. The first round of grants was announced in 2017 and included a fellowship grant awarded to Dr. Chen Shen, a research fellow at Northwestern University.  Her study is entitled “Dissection of ATRX in Diffuse Intrinsic Pontine Glioma.”

Defeat DIPG ChadTough Fellowship grants are designed to encourage outstanding scientists to choose a career involving DIPG research.

“This fellowship provides me an opportunity to work on an area that few people focus on, and the passion of the families like the Carrs and Mosiers keeps me motivated every day to try to find a cure,” shares Dr. Shen.

Members of the Defeat DIPG team visit Dr. Shen in the Northwestern lab.

Under the direction of Dr. Oren Becher at Northwestern University Feinberg School of Medicine, Dr. Shen’s project focuses on the ATRX protein and its role in driving DIPG tumor growth.  Dr. Becher’s laboratory is unique because they study DIPG exclusively and do so through genetically engineered mouse models.  Because DIPG is a heterogeneous disease, they can develop mouse models to control for specific mutations to understand how each mutation may contribute to DIPG.  

The first step of Dr. Shen’s project was to develop a new mouse model that also deleted ATRX in addition to the histone mutation to study how ATRX contributes to DIPG formation.  While the histone mutation is commonly seen in human DIPG tumors, ATRX has been found to be deleted in a subset of only 10-30% of human DIPG tumors.   When ATRX deletions do occur in human DIPG tumors, they co-occur with the more commonly seen histone mutations.  This model will be used to look at what happens when you add the deletion of ATRX on top of the histone mutation.  

Dr. Becher reports that the new mouse model has been developed and work is ongoing to evaluate how ATRX deletion changes genes that are turned on in tumor cells.  Final results are expected at the end of this year.  

Interestingly, they were also able to obtain additional information on some other genes that appear to be regulated by ATRX loss with this model, and are currently validating these genes that are differentially expressed between the tumors with and without ATRX.  “Once we validate these genes that appear to be regulated by ATRX, this will be important knowledge for the field because it has not been well described what genes are regulated by ATRX in DIPG cells specifically with the histone mutation,” said Dr. Becher.  

Additionally, Dr. Shen will test some of the ATRX mutant mouse cell lines with and without ATRX loss to see how ATRX affects response to radiation. Radiation is the current standard of treatment for DIPG used to temporarily improve clinical symptoms, and can increase survival by about 3-6 months.  Dr. Becher notes that not all children with DIPG respond to radiation in the same way.  “There are some kids that we treat with radiation and they don’t benefit at all and some that have a dramatic response,” said Dr. Becher.  Because of these differences in response, they would like to explore if this response can be linked to ATRX loss.    

Dr. Becher’s lab will continue this project after the fellowship grant work ends as they have some new angles to explore once the target genes that appear to be regulated by ATRX have been validated.  This work is planned to begin soon.   

Written by Ellen Klepack, a ChadTough Volunteer Writer

3rd Annual Defeat DIPG Dream Big Gala Raises Over $470,000

The 3rd Annual Defeat DIPG Dream Big Gala, presented by DARCARS Automotive Group was held on Saturday, October 26. Thanks to our sponsors, attendees and other supporters, we are thrilled to report that we raised over $470,000! We are deeply grateful to all of our sponsors who stand with us in this fight and supported this important event.

This year’s Michael Mosier Big Hero Award honoree and keynote speaker was world-renowned author Mitch Albom. Mitch gave a riveting speech about Chika Jeune, the beautiful little girl who he and his wife Janine brought into their home and family from an orphanage in Haiti, during Chika’s battle with DIPG. It was a privilege to get to know more about Chika through Mitch’s loving words. Through the stories he shared and videos of Chika, her incredible spirit shines through and touched all of our hearts. Mitch’s new book, Finding Chika, will be released on November 5.

Mitch Albom, receiving the Michael Mosier Big Hero Award at the Defeat DIPG Dream Big Gala

Each year, we present the Michael Mosier Big Hero Award to a recipient who has made an extraordinary commitment to Defeat DIPG. The care and compassion that Mitch and Janine showed to their beloved Chika is a beautiful act in and of itself. And the gift of sharing her story with the world through Finding Chika will not only ensure that Chika is always remembered, but also educate millions about the impact of DIPG and the devastating struggle that all children with this disease have endured.

Dreaming Big is dreaming of a cure for DIPG brain tumors. These funds will be put into action to make sure we are pushing forward our mission to Defeat DIPG.

It was our biggest gala yet, with over 500 tickets sold, and you could feel the strength and determination of our crowd. Progress will happen because we work together. Strides will be made because so many who haven’t been personally touched by DIPG decide to take up the cause as their own.

For those families who unfortunately are part of the DIPG club, we thank you for standing with us and allowing us to honor your children. It was especially meaningful to have so many of you there in person, especially when we know that the emotions of the night are so hard on your hearts. 

To each person who joined us, sponsored DIPG family tickets, donated or bought auction items, and otherwise contributed to our mission, THANK YOU.

This year’s gala ended up on Game 4 of the World Series, with a game at home for Michael’s beloved Nationals. Michael dreamed of becoming a professional baseball player, and it was somehow fitting that the gala overlapped with D.C.’s first World Series since 1933. We continue this fight so that kids like Michael can carry out their dreams. 

We Dream Big. And, these kids deserve nothing less. Together, we will Defeat DIPG.

Immunotherapy Experts Gather to Tackle DIPG

Immunotherapy researchers from across the globe gathered in Zurich, Switzerland, on August 7-8, 2019, for a first-of-its-kind meeting on the role of immunotherapy in treating DIPG and DMG. The working meeting, sponsored by Michael Mosier Defeat DIPG Foundation and organized by the DIPG Center of Expertise Zurich (DCEz), was a gathering of researchers working together to explore and develop a path forward to apply immunotherapy treatments to DIPG and DMG.

“The invited team represented physicians, scientists, and clinical trialists. We need all three areas of expertise to experiment, validate, and translate the knowledge,” explains Javad Nazarian, PhD, MSC, head of the DIPG Research Institute of DCEz and member of the Defeat DIPG Scientific Advisory Council, “This meeting was the first of such focused meetings and we hope that more like-minded colleagues will join to help in making a difference.” 

Over the past two years, Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation, with their chapters and partner families, have made immunotherapy research initiatives a priority and have awarded $500,000 in Defeat DIPG ChadTough Grants to support promising immunotherapy studies.

“Immune-therapeutic approaches have achieved significant breakthroughs for specific adults cancers as well as leukemia; however, successful implementation of immunotherapy for patients with brain tumors – specifically for children with one of the deadliest tumors referred to as DIPG – remains under active investigation,” says Sabine Mueller, MD, PhD, Head of the Clinical Programme of the DCEz and pediatric neuro-oncologist at University of California – San Francisco, “Leading experts will be gathered in this Think Tank to outline a roadmap how to best move immunotherapy approaches forward in children with brain tumors.”

Dr. Nazarian adds, “The meeting would not have happened without the support of Michael Mosier Defeat DIPG Foundation.  The idea of having such a meeting was born just this Spring and the foundation immediately volunteered to support the meeting.  This is a classic example of foundations helping to push the science forward, because they know how little time these children have.”

DCEz, which is a part of the University Children’s Hospital of Zurich and supported with funds by the Eliminate Cancer Initiative, focuses on finding novel ways of treating of DIPG and DMG by researching different drug delivery pathways, combining multiple drugs into a combined therapy, and marrying the best of medical and scientific knowledge bases. The center is hoping to offer new treatments and treatment options to those suffering from DIPG and DMG.

Keep up with what’s going on at the DIPG/DMG Immunotherapy Meeting on Defeat DIPG’s social media accounts (@DefeatDIPG).

Harvard’s Dr. Anastas: Applying Epigenetics to Unlock the Mystery of DIPG Growth

Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation, with our chapters and partner families, have partnered to fund more than $3.3 million in Diffuse Intrinsic Pontine Glioma (DIPG) research grants. Their first round of grants was announced in 2017 and included a fellowship grant awarded to Dr. Jamie Anastas, a research fellow at Harvard University and […]

Defeat DIPG Executive Director Jenny Mosier Speaks at FDA Public Hearing Regarding ONC201

Video of Jenny Mosier’s Remarks

On June 20, 2019, Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation, gave a presentation to the Food and Drug Administration (FDA) regarding development of ONC201 as a potential therapy for DIPG patients. In her remarks, Mosier urged the FDA (1) to include DIPG patients in the development of ONC201, (2) to utilize all tools available to expedite development and approval of ONC201 for DIPG, and (3) while ONC201 continues to be studied, to take steps within the trial or through expanded access to enable as many patients as possible to gain access to the drug.

The public hearing was held by the FDA’s Pediatric Oncology Subcommittee of the Oncologic Drugs Advisory Committee, to gauge investigator interest in exploring potential pediatric development plans for ONC201, including discussion of diseases to be studied, patient populations to be included, and possible study designs in the development of this product for pediatric use.

Oncoceutics, Inc., the company developing ONC201 presented its early findings and plans for development of ONC201. Two current DIPG families gave passionate and moving presentations about their experience taking ONC201. Al Musella of The Musella Foundation also advocated for prompt action to move forward ONC201 development and approval.

Michael Mosier Defeat DIPG Foundation has made grants of over $166,000 in support of development of ONC201 and to help increase availablilty of ONC201 for DIPG patients, including through Oncoceutics’ expanded access program.

You can view written materials available from the meeting on the FDA website. FDA provided a live webcast of the meeting, and they plan to post the archived webcast after the meeting conclusion. It should appear here once available.

4th Annual Defeat DIPG Superhero 6K Raises Over $245,000

The 4th Annual Defeat DIPG Superhero Sprint & 6K was the biggest yet, raising over $245,000 (and counting) with an incredible 2,400 participants. This included 1,800 people registered for the in-person event on the grounds of our Community Partner Westfield Montgomery in Bethesda, and 600 virtual runners supporting the event across the world!

Photo by Joanna Little

We want to especially thank our special superheroes who joined us at the race: Delaney Heller, Jack Overton, Maddie Hartman, and Mikeal Richardson. We were so thankful to have them with us, and we stand with them as they fight so bravely against DIPG. We also send love to Libby Goodwin who was unable to make it but had her father and sisters representing her at the event.

Special congratulations to all of our Top Race Finishers. Scott Anderson of Washington, DC was the 1st place male open finisher and #1 overall with a time of 22:13. Rachel Greszler of Bethesda, MD was our top female open finisher with a time of 25:46. Thank you to Urban Plates for donating gift card prizes for the top male open, female open, and masters runners.

Photo by Dan Reichmann

Our top fundraising team for the event was the amazing MIRAH’S MANY, created in memory of and inspired by sweet Mirah Chhabra, who passed away from DIPG in December 2018. Her parents, Mandeep and Hanita, and sister, Hanna, led their team to raise over $48,000, with over 700 runners registered. We thank all members of Mirah’s Many who helped with this incredible contribution to the mission to Defeat DIPG. Our top individual fundraiser for the event was a member of Mirah’s Many, Zachary Zimmerman, who raised over $1,600.

Together, all participants who have fundraised for this event generated over $121,000 and counting.

Our event sponsors made this great race possible. Our Presenting Sponsor Headfirst Summer Camps brought their incredible team out to ensure that all participants had a wonderful time, especially our youngest runners who had entertainment throughout the day at our Superhero Central. Please join us in also thanking our Platinum Sponsors Center for Vascular MedicineDARCARS Automotive GroupMy Mental Health LLC, and Silver Lining Design Group; our Gold Sponsors Borrus Family DentistryKaiser Permanente Thrive, and The Abramson & Posner Families. Please check out our Sponsorship page to see our full list of generous sponsors, and be sure to support these philanthropic businesses.

We thank Tommy McFly from The Tommy Show! and NBC4Washington for his time, energy and passion for the cause; DJ Jamaal for the awesome tunes that kept us all having fun yesterday; and Joanna Little Photography and Yee-Ann Soong for capturing event photos (which we will share soon!); Quiet Sweep for generous assistance with race cleanup; Elizabeth O’Connor, Jen Davis, and Gina Spallina for their work on the Salute Our Superheroes Wall; and Alex and Ari Reichmann from Rock Creek Velo for doing a great job as our bike leads.

We had a stellar group of volunteers that worked incredibly hard and made this event possible. We thank the excellent event staff from Montgomery County Road Runners for their expert assistance on race day. We thank the management and secuirty teams at Westfield Montgomery for their invaluable support. And, we are grateful to the spectators that made key contributions to the fun and festive atmosphere.

We are so grateful for each and every one of you. Thank you for your support for our event and the fight to Defeat DIPG!