Defeat DIPG, ChadTough Give $2.2 Million to Fund Seven DIPG-Specific Projects

Mark and Jenny Mosier and Tammi and Jason Carr

Michael Mosier Defeat DIPG Foundation and The ChadTough Foundation are funding seven new Diffuse Intrinsic Pontine Glioma (DIPG)-specific research projects totaling more than $2.2 million over the next three years (2019-21). To date, the Defeat DIPG ChadTough partnership has committed $3.3 million to 13 DIPG research projects, ranging in focus from immunotherapy to fundamental biology of DIPG to epigenetics.

“To see that number – that we’ve come together to give $3.3 million to DIPG-specific research – is incredible,” said Tammi Carr, co-founder of The ChadTough Foundation. “Family foundations are the driving force behind finding a cure for this monster, so to be able to award this much over the past two years is an amazing feeling.”

The seven projects to be funded include: two research grants ($600,000 over three years), one fellowship ($150,000 over two years), and four new investigator grants ($250,000 over two years), which are new to this year’s Defeat DIPG ChadTough grantmaking cycle.

“A big part of our funding strategy is to increase the number of researchers dedicating their focus to DIPG,” said Defeat DIPG co-founder Mark Mosier. “New investigator grants are directed toward individuals in their first independent faculty position or those who have never researched brain tumors, which means we’re reaching a new group of scientists.”

Another important part of their strategy was to make longer-term commitments to funding the researchers awarded grants. 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.

“As families that have been through the devastation of this disease, we recognize the urgency for answers,” said Jason Carr, co-founder of The ChadTough Foundation. “We put our grant application in front of as many talented researchers as we could, and structured our grants to set them up for success.”

All projects are reviewed by the Defeat DIPG Scientific Advisory Council made up of Darell Bigner (Duke University School of Medicine), Suzanne Baker (St. Jude Children’s Research Hospital), 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 (Children’s National Medical Center).

The Defeat DIPG ChadTough partnership was announced in 2017 with the funding of six projects (three research grants, three fellowships), totaling over $1 million over two years (2018-19). The Carr and Mosier families originally connected in the months following their sons being diagnosed with DIPG in September 2014. They quickly uncovered their shared passion for honoring their sons through raising research dollars.

Defeat DIPG ChadTough Partnership

(Top, L-R): Chad, Michael, Connor; (Middle, L-R): Tommy, Vivian, Avery; (Bottom, L-R): Julian, Anthony, Addison

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

The ChadTough Foundation is led by co-founders Jason and Tammi Carr (Chad), and includes partner families Brad and Nettie Boivin (Team Julian), and Tom and Amanda Ruddy (Team Tommy).

Michael Mosier Defeat DIPG Foundation is led by co-founders Mark and Jenny Mosier, and includes their Defeat DIPG Network chapters: Addison Grace Defeat DIPG Foundation (PA), Anthony’s Avengers Defeat DIPG Foundation (IL), Avery Huffman Defeat DIPG Foundation (WA), Connor Man Defeat DIPG Foundation (TX), and Vivian Rose Weaver Defeat DIPG Foundation (WA).

“Each family has channeled their grief into raising money for research,” said Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “While nothing will erase the loss we feel, standing together to make tangible progress in this fight is one thing that keeps us going.”

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

Research Grants

  • Stefanie Galban, University of Michigan, “Targeting Cancer Stem cells in Diffuse Intrinsic Pontine Glioma (DIPG).
  • Nalin Gupta and Daniel Lim, University of California San Francisco, “Use of Long Non-coding RNA (IncRNA) as a Therapeutic Target in DIPG”

New Investigator Grants

  • Sameer Agnihotri, University of Pittsburgh, “Therapeutic Targeting of Metabolic Vulnerabilities in DIPG”
  • Pratiti Bandopadhayay, Dana-Farber Cancer Institute, “Characterizing long non-coding RNAs as therapeutic targets in DIPG”
  • Sujatha Venkataraman, University of Colorado-Denver, “MIC2 inhibition mediated apoptosis in DIPG”
  • Nicholas Vitanza, Fred Hutchinson Cancer Research Center, “Optimal combinatorial targeting of HDAC inhibition and radiation in DIPG”

Fellowships

  • Nneka Mbah, University of Michigan, “Therapeutic Targeting of the Disrupted Metabolic State in DIPG to Induce Ferroptotic Cell Death”

Vivian Rose Weaver Defeat DIPG Foundation Announces $1 Million Donation to DIPG Research and $2 Million 2018 Goal

Vivian Rose Weaver Defeat DIPG Foundation, in Husum, WA, is excited to announce that a generous anonymous supporter has donated $1 million that will be used towards DIPG-specific research funding in 2018. Vivian Rose Weaver Defeat DIPG Foundation was inspired by, and established in honor of, Vivian Rose Weaver, who is a smart, articulate, funny, sweet, thoughtful, imaginative, precocious, 3.5-year-old little girl who was diagnosed in February 2018 with a brainstem tumor called diffuse intrinsic pontine glioma (DIPG). DIPG is the deadliest form of pediatric brain cancer.  Vivian Rose Weaver Defeat DIPG Foundation is a chapter of Michael Mosier Defeat DIPG Foundation and part of Defeat DIPG Network.

Co-Founders Katie and Simon Weaver are focusing on Vivian’s care, and her little sister Lucie, as their top priority.  But they are also already making a substantial impact on the field of DIPG research by raising crucial funds to find a cure.

And the Weavers are not stopping with $1 million.

Vivian Rose Defeat DIPG Foundation would like to raise an additional $1 million this year, with an overall 2018 goal of $2 million raised for research.  To put these numbers in perspective, the overall funding for DIPG research in any given year has typically been – at most – $2-5 million in a year.  This is .0005% of the total funding for cancer research.

The funds raised will support the most promising DIPG research initiatives through the Defeat DIPG grantmaking process.  All grant applications go through a rigorous review by a preeminent group of brain tumor experts that serve on the Defeat DIPG Scientific Advisory Council to ensure funds are used efficiently for initiatives with high scientific merit.

We call on everyone to join this effort.  And, it couldn’t be easier.

An initiative called the #LemonFaceChallenge, started by a little girl named Aubreigh who is also fighting DIPG, has triggered worldwide attention to DIPG brain tumors.  It has been heartening to see professional sports teams and coaches, members of the media, and so many others participate. The challenge is in the mold of the Ice Bucket Challenge, which raised $115 million in the summer of 2014 for ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease), dramatically increasing available funds for research for that disease.

Vivian Weaver, who inspired the $1 million donation to DIPG research, along with her parents Simon and Katie, are asking you to help us generate even more funds to find a cure.  Vivian and the Weaver family are taking #LemonFaceChallenge and calling on you to keep the challenge going.

Here’s what you do:

  1. Take a video of yourself, your kids, your friends, your co-workers – anyone you can who will participate in the #LemonFaceChallenge, which means you take a big bite out of a lemon wedge!
  2. Tell them you are donating to Defeat DIPG and doing the video to find a cure for children facing DIPG, the deadliest form of pediatric brain cancer.
  3. Share the video and tag as many friends as you can and ask them to take the challenge.
  4. Donate to Vivian Rose Defeat DIPG Foundation through the Facebook fundraiser pinned to the top of their Facebook page (which has no processing fees), through their website, or through any member of Defeat DIPG Network.

DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

Raising $2 million through this initiative is a lofty goal.  But, if kids like Vivian can fight hard every single day to beat this brain tumor, we can fight just as hard to make sure there are effective treatments for kids like her.

By supporting Defeat DIPG Network, you have the opportunity to move the needle and help us save lives of our precious children.  Together, we will substantially increase research funding while also greatly increasing awareness of this devastating disease.

Michael Mosier Defeat DIPG Foundation Announces New Washington Chapter Honoring Three-Year-Old Vivian Rose Weaver Who Is Fighting DIPG Brain Tumor

Michael Mosier Defeat DIPG® Foundation, a nonprofit whose mission is finding a cure for the deadliest pediatric brain cancer, DIPG (diffuse intrinsic pontine glioma), announced today the addition of a second chapter in Washington State, to its Defeat DIPG® Network:  Vivian Rose Weaver Defeat DIPG® Foundation.  Vivian Rose Weaver Defeat DIPG Foundation is founded in honor of Vivian Rose Weaver, a 3.5-year-old girl from Husum, Washington, who has been battling a DIPG brain tumor for nearly 3 months.

The new chapter adds to Defeat DIPG Network’s existing presence across the United States, in Maryland, Washington, D.C., and Kansas as Michael Mosier Defeat DIPG Foundation, in Illinois as Anthony’s Avengers Defeat DIPG® Foundation, in Pennsylvania as Addison Grace Defeat DIPG® Foundation, in Texas as Connor Man Defeat DIPG® Foundation and in Washington as Avery Huffman Defeat DIPG® Foundation. The Defeat DIPG Network has raised over $2 million for DIPG research in 2.5 years.

Vivian Rose Weaver was diagnosed with a brainstem tumor on February 1, 2018. With great bravery, 3-year-oldVivian has faced a number of difficult medical procedures over the past few months, including a biopsy and 30 rounds of radiation treatment that required daily sedation. Vivian’s family describes her as a smart, articulate, funny, sweet, thoughtful imaginative, and precocious little girl who is full of love for life and people.  Fortunately, Vivian has been doing well and is virtually symptom free.

“Learning that our little girl has DIPG was devastating – a worst case scenario,” says Vivian’s mother Katie Weaver, who will serve as the Director of Vivian Rose Weaver Defeat DIPG Foundation. “We are launching a multi-pronged attack on this disease, through our prayers for God’s healing, by finding the most promising treatments we can for Vivian, and now through our efforts to raise fund for essential research for a cure.”

Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation in June 2015 to fund DIPG research and promote awareness of the disease, after the passing of their 6-year-old son Michael. With its geographic expansion and growth of existing initiatives, the Foundation expects to continue to increase its capacity to fund essential childhood cancer research.

In December 2017, the Foundation announced over $1 million in DIPG-specific research funding, in partnership with The ChadTough Foundation. Michael Mosier Defeat DIPG Foundation works with a preeminent Scientific Advisory Council of brain tumor experts that advises its Board of Directors on how to maximize its resources to fund research for a cure for DIPG. The Foundation will soon begin accepting grant applications for 2018, and expects to announce another round of funding before the end of 2018.

The Mosier, Gaskin, Holl, Huffman, Olympia, and Weaver families will work to grow the already powerful base of support in each of their communities, and to honor and unite all children and families who have had to confront this disease.

“Joining together with the Weaver family – who are in the midst of the difficult fight against this disease with their precious daughter Vivian – even further motivates our efforts and our urgency to find a cure for DIPG,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “After experiencing firsthand the cruel impact DIPG inflicted on our own children, we are laser focused on our mission to eradicate this disease.”

DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

For decades, treatment for DIPG has remained the same and has been ineffective. The entire amount spent annually on DIPG research – approximately $3 – 5 million – is less than 0.0005% of the total funding for cancer research.  In just the past few years, due to better medical technology and increased access to tumor tissue, researchers have made real advances in their understanding of this disease.  There is finally hope for progress in finding a cure.

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Michael Mosier Defeat DIPG Foundation Announces New Pennsylvania Chapter: Addison Grace Defeat DIPG Foundation

Michael Mosier Defeat DIPG Foundation, a nonprofit whose mission is finding a cure for the deadliest pediatric cancer, DIPG (diffuse intrinsic pontine glioma), announced today the addition of a chapter in Mechanicsburg, Pennsylvania, to its Defeat DIPG® Network:  Addison Grace Defeat DIPG Foundation. The new chapter adds to Defeat DIPG Network’s existing presence across the United States, in Maryland, Washington, D.C., and Kansas as Michael Mosier Defeat DIPG Foundation, in Illinois as Anthony’s Avengers Defeat DIPG Foundation, in Texas as Connor Man Defeat DIPG® Foundation and in Washington as Avery Huffman Defeat DIPG® Foundation. The Defeat DIPG Network has raised over $2 million for DIPG research in 2.5 years.

The Pennsylvania chapter, which will operate as Addison Grace Defeat DIPG Foundation, is founded in memory of Addison Grace Holl. Addison was a fun loving seven-year-old when she was diagnosed with DIPG. She lived for almost two years after diagnosis before she passed away a month before her ninth birthday. In her short life, she touched many lives and her spirit continues to live on through acts of kindness. She was taken decades before she should have been, and her loved ones are determined to make a difference in the fight against DIPG. Addison’s mother, Kim Holl, will serve as the Director of Addison Grace Defeat DIPG Foundation.

Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation in June 2015 to fund DIPG research and promote awareness of the disease, after the passing of their 6-year-old son Michael. With its geographic expansion and growth of existing initiatives, the Foundation expects to continue to increase its capacity to fund essential childhood cancer research.

In December 2017, the Foundation announced over $1 million in DIPG-specific research funding, in partnership with The ChadTough Foundation. Michael Mosier Defeat DIPG Foundation works with a preeminent Scientific Advisory Council of brain tumor experts that advises its Board of Directors on how to maximize its resources to fund research for a cure for DIPG. The Foundation will soon begin accepting grant applications for 2018, and expects to announce another round of funding before the end of 2018.

The Mosier, Gaskin, Holl, Huffman, and Olympia families will work to grow the already powerful base of support in each of their communities, and to honor and unite all children and families who have had to confront this disease.

“There is power in joining together with other passionate families who are similarly dedicated to finding a cure for this devastating disease,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “We have seen firsthand the impact DIPG inflicted on our own children, so we are laser focused on pushing the field forward so in the future kids will have viable treatment options and hope for long term survival.”

DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

For decades, treatment for DIPG has remained the same and has been ineffective. The entire amount spent annually on DIPG research – approximately $3 – 5 million – is less than 0.0005% of the total funding for cancer research.  In just the past few years, due to better medical technology and increased access to tumor tissue, researchers have made real advances in their understanding of this disease.  There is finally hope for progress in finding a cure.

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Defeat DIPG ChadTough partnership

Defeat DIPG, ChadTough Come Together to Award Research Grants

When it comes to diseases considered “rare” by the medical community, family foundations are pivotal in driving research dollars. Diffuse Intrinsic Pontine Glioma (DIPG) is a prime example of this.

While DIPG is “rare” — approximately 200-400 children in the US alone are diagnosed annually — the lack of options for those diagnosed is unacceptable. To watch a child go through progression of the disease is heartbreaking and something no parent should ever have to go through.

Tammi and Jason Carr and Jenny and Mark Mosier have each lost a son to DIPG. Their sons, Chad and Michael, were diagnosed the same month – September 2014. Chad was three days shy of turning four and Michael had just turned six.

ChadTough Defeat DIPG partnership

Michael Mosier (left) and Chad Carr.

“He was diagnosed on September 4 of 2014 — a week after his birthday and he started kindergarten,” said Jenny of Michael.

“Thinking back to the day of diagnosis, it is so surreal when you’re in the moment. Being diagnosed with cancer is one thing — it is horrible and life-changing — but to hear that your child has a brain tumor with essentially no chance of survival … there really are no adequate words to describe the feeling.”

Jenny’s sentiment is similar to what Tammi shared on the ESPN feature aired November 2015, the week following Chad’s passing.

“You think cancer and you think, ‘What do we have to do to fight this? and ‘What’s the treatment plan – what’s the protocol?’” said Tammi. “And when you hear there isn’t any for this disease … that takes the wind out of you.”

A Shared Passion

From the moment the Carr and Mosier families connected, they had a shared vision and passion for fighting DIPG.

“We just gelled with them from the get-go,” said Tammi. “We’ve done a lot of things that way throughout this journey — things that feel right and we know that God’s telling us the right thing to do.

“Our relationship with them has felt right from day one.”

So when the Carrs learned of the medical advisory board the Mosiers were putting together for their foundation, Defeat DIPG, they were interested in getting involved.

“The medical advisory council they’ve put together is incredible,” said Jason. “These are some of the best minds out there working to eradicate DIPG. As soon as they told us what they were doing, we knew we had to be a part of it.”

Defeat DIPG has a Scientific Advisory Council made up of Darell D. Bigner, MD, PhD (Duke University School of Medicine), Suzanne Baker, PhD (St. Jude Children’s Research Hospital), Oren J. Becher, MD (Northwestern University’s Feinberg School of Medicine), Cynthia Hawkins, MD, PhD (Hospital for Sick Children), and Duane Mitchell, MD, PhD (University of Florida College of Medicine).

Scientific Advisory Council

The Michael Mosier Defeat DIPG Scientific Advisory Council:
(L-R) Bigner, Baker, Becher, Hawkins, Mitchell.

The Council “reviews grant applications and makes recommendations to ensure that the Michael Mosier Defeat DIPG Foundation uses its resources to fund the most promising DIPG research projects.”

As the advisory council was being put together, the Mosiers and the Carrs had many conversations around the idea of joining together to fund projects.

Now, heading into 2018, that partnership is becoming a reality.

“It is really an honor to work with Tammi and Jason to fight against this horrible disease,” said Jenny. “There are few people who understand what it is like to lose a child to DIPG, and, unfortunately, the Carr family is with us in that group.

“From that common experience with our precious boys we have developed a valued friendship and a partnership with trust and shared purpose.”

A Larger Team of Fighters

The Mosiers and Carrs aren’t the only families involved in this project.

The Michael Mosier Defeat DIPG Foundation has a network with three others families: Amanda and Brandon Huffman (Avery Huffman — Avery Huffman Defeat DIPG Foundation), Alexis and Peter Olympia (Connor Olympia – Connor Man Defeat DIPG Foundation), and Katie Gaskin (Anthony Pappalas – Anthony’s Avengers Defeat DIPG Foundation.

The ChadTough Foundation also has a partner family, Tom and Amanda Ruddy, who lost their son, Tommy.

ChadTough Defeat DIPG partnership

(L-R) Avery Huffman, Connor Olympia, Anthony Pappalas, and Tommy Ruddy.

“We really see this as not just the Carrs and Mosiers, but a partnership including all six of the families working as part of our foundations,” said Mark. “We think very highly of the Ruddys and look forward to working in partnership with them as well.”

“It’s great to have so many families coming together,” added Jason. “We are stronger as a unit and we each have a network of support, which helps in spreading awareness.”

Funding DIPG Projects

This month, the Mosiers and Carrs spoke with the Defeat DIPG Scientific Advisory Council regarding grant applications to be funded in 2018. Once details are finalized, the foundations expect to make a joint announcement in mid-December, detailing the projects to be funded.

After all of the hard work put into building their respective foundations, the process of funding projects that will tangibly move the needle forward for DIPG is incredibly gratifying.

“We are excited to form this partnership with the ChadTough Foundation,” said Mark.

“We are so impressed by the amazing work that Tammi and Jason are doing to bring attention to DIPG. By working together, we can make an even greater impact on advancing DIPG research and ensuring that children diagnosed with DIPG in the future will have access to the effective treatments that Michael, Chad, and all kids who faced DIPG deserved.”

Announcing the projects that will be funded is exciting and important for both families. Jason and Tammi and Mark and Jenny have seen countless supporters offer time and money to their respective causes and this feels like a gift for them.

“All of these people give so much to each of our foundations,” said Tammi.

“It is an amazing feeling to be able to show them what is being done with their donations. Pivotal research is being performed that wouldn’t have been possible without their efforts. ‘Thank you’ just isn’t enough to express how we feel.”

Michael Mosier Defeat DIPG Foundation Announces New Chicago Chapter: Anthony’s Avengers Defeat DIPG Foundation

Michael Mosier Defeat DIPG® Foundation, a nonprofit whose mission is finding a cure for the deadliest pediatric cancer, DIPG (diffuse intrinsic pontine glioma), announced today the addition of a chapter in Chicago, Illinois, to its Defeat DIPG® Network: Anthony’s Avengers Defeat DIPG® Foundation. The new chapter adds to Defeat DIPG Network’s existing presence across the United States, in Maryland, Washington, D.C., and Kansas as Michael Mosier Defeat DIPG Foundation, in Texas as Connor Man Defeat DIPG® Foundation and in Washington as Avery Huffman Defeat DIPG® Foundation. The Defeat DIPG Network has raised over $1 million for DIPG research in less than 2 years.

The Chicago chapter, which will operate as Anthony’s Avengers Defeat DIPG Foundation, is founded in memory of Anthony Pappalas. Anthony was 7 years old when he passed away from DIPG on March 9, 2017, after bravely fighting the disease for 19 months. Anthony would be turning 8 years old on September 2, 2017. His family describes him as a brilliant boy, filled with love, laughter, and lots of smiles, who wanted to be an astronomer for NASA when he grew up. Throughout his battle, Anthony taught his family, friends, and community the true meaning of courage, faith, and love. Anthony’s mother, Katie Gaskin, will serve as the Director of Anthony’s Avengers Defeat DIPG Foundation.

Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation in June 2015 to fund DIPG research and promote awareness of the disease, after the passing of their 6-year-old son Michael. They announced the creation of two chapters in May 2016, which established the Defeat DIPG Network. With its geographic expansion and growth of existing initiatives, Michael Mosier Defeat DIPG Foundation expects to continue to increase its capacity to fund essential childhood cancer research. The Mosier, Huffman, Olympia, and Gaskin families will work to grow the already powerful base of support in each of their communities, and to honor and unite all children and families who have had to confront this disease.

Michael Mosier Defeat DIPG Foundation works with a preeminent Scientific Advisory Council of brain tumor experts that advises its Board of Directors on how to maximize its resources to fund research for a cure for DIPG. The Foundation is accepting grant applications through October 2, 2017 and expects to announce new funding before the end of 2017.

“Working together with other DIPG families who have experienced firsthand the devastation inflicted by DIPG creates a powerful shared motivation to find a cure,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “After watching our own children suffer from this disease, without hope for survival, we know the urgent need for medical advances focused on DIPG. It is a privilege to work alongside families who feel as passionately as we do about funding research to give children diagnosed with DIPG hope for a bright future.”

DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

For decades, treatment for DIPG has remained the same and has been ineffective. The entire amount spent annually on DIPG research – approximately $3 – 5 million – is less than 0.0005% of the total funding for cancer research. In just the past few years, due to better medical technology and increased access to tumor tissue, researchers have made real advances in their understanding of this disease. There is finally hope for progress in finding a cure.

A copy of the full press release is available here.

Defeat DIPG Foundation Raises Over $1 Million for DIPG Research

 

We are thrilled to share an exciting milestone as we wrap up Brain Cancer Awareness Month. Due to your generosity and support, Michael Mosier Defeat DIPG® Foundation is proud to announce that we have raised over $1 million for DIPG research since our nonprofit was created in the second half of 2015.

Working with our Defeat DIPG® Network partners – Avery Huffman Defeat DIPG Foundation and Connor Man Defeat DIPG Foundation – we have been able to share in the growth of a movement of families, supporters and advocates who feel passionate about making real progress in finding a cure for the deadliest childhood cancer: DIPG brain tumors. We are eager to consider grant applications during our 2017 funding cycle. With the guidance of our exceptional Scientific Advisory Council, we will ensure each dollar is put towards the most promising DIPG research.

Whether you have attended events, donated to a tribute fund, made us the beneficiary of a local fundraiser, shared our posts, or volunteered your time, we are thankful for YOU. We want to hear your ideas, and we want to partner with you. You can always reach us at info@defeatdipg.org.

Our passion and drive has never been greater. We fight for every child who has faced or will face this devastating disease. We are proud to stand alongside each of you to carry out our mission to Defeat DIPG.

Be sure to follow us on Facebook, Twitter & Instagram.

Michael Mosier Defeat DIPG® Foundation Expands its Board of Directors and Appoints a Scientific Advisory Council.

To kickoff Brain Tumor Awareness Month, Michael Mosier Defeat DIPG® Foundation is excited to announce that it has expanded its Board of Directors and has appointed a Scientific Advisory Council.

In 2016, its first full year in operation, Michael Mosier Defeat DIPG Foundation enjoyed a successful year in raising funds for research for effective treatments for diffuse intrinsic pontine glioma (DIPG), the deadliest form of childhood brain cancer.  The Foundation extended its reach across the country by opening chapters in Texas (Connor Man Defeat DIPG Foundation) and Washington (Avery Huffman Defeat DIPG Foundation).  The Foundation raised over $600,000 in 2016, and is quickly approaching $1,000,000 raised in less than two years of operation.

The expanded Board of Directors will help position the Foundation to continue to expand and grow.  The new Board members bring a diverse set of talents and expertise, with a shared commitment to the Foundation’s mission:  Finding a cure for DIPG.  The Board of Directors is chaired by Mark Mosier, and includes Dr. Henry Friedman, J. Brandon Huffman, Julie McEvoy, Jenny Mosier, Peter Olympia, Amanda Posner, Dr. Marshall Urist, and Porter Wilkinson.  Information about each of the board members is available at https://www.defeatdipg.org/board-of-directors.

As one of its first acts, the Board approved the formation of a Scientific Advisory Council. The Scientific Advisory Council will advise the Foundation on how to maximize its resources in funding research for a cure for DIPG.  The Council will provide strategic guidance on the types of grants to offer and will review grant applications to make recommendations regarding which research projects should be funded.

The Scientific Advisory Council is chaired by Dr. Darell Bigner, the Director of the Preston Robert Tisch Brain Tumor Center at Duke University, who brings more than 40 years of experience in brain cancer research.  He is joined on the Scientific Advisory Council by some of the foremost experts in DIPG research:  Dr. Suzanne Baker at St. Jude Children’s Research Hospital, Dr. Oren Becher at Northwestern University’s Feinberg School of Medicine, Dr. Cynthia Hawkins at Hospital for Sick Children, and Dr. Duane Mitchell at University of Florida College of Medicine.  Additional information about each of the members of the Scientific Advisory Council is available at https://www.defeatdipg.org/scientific-advisory-council.

Michael Mosier Defeat DIPG Foundation will soon begin accepting grant applications for DIPG research projects.  The deadline for submitting applications will be September 1, 2017.  The Foundation expects to make grant decisions before the end of 2017.

DIPG is a brainstem tumor that typically strikes children between ages four and eleven. DIPG is the deadliest pediatric cancer, with a median survival from diagnosis of 9 months and overall survival near 0%.  The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

Michael Mosier Defeat DIPG Foundation, and its partners in Defeat DIPG Network, dedicate their efforts to promoting awareness and finding treatments and a cure for DIPG through funding of medical research.

Visit www.defeatdipg.org for more information.  Michael Mosier Defeat DIPG Foundation is also on Facebook (www.facebook.com/defeatdipg) and Twitter (www.twitter.com/defeatdipg).

For more information about Avery Huffman Defeat DIPG Foundation, visit their website (https://averystrongdipg.org) and follow them on Facebook (www.facebook.com/averystrongdipg) and Twitter (www.twitter.com/averystrongdipg).

For more information about Connor Man Defeat DIPG Foundation, visit their website (https://connorman.org) and follow them on Facebook (facebook.com/ConnorManFoundation) and Twitter (twitter.com/cmodefeatDIPG).