Defeat DIPG Giving Tuesday Initiative Raises Over $104,000

We express our deep gratitude to the amazing supporters of Defeat DIPG® Network and the fight to find a cure to the deadliest brain cancer: DIPG brain tumors.
 
We are so thrilled to announce the results of our #Give2DefeatDIPG initiative on November 28th:
 
🌟 Over $104,000 for DIPG research 🌟
🌟 Over 730 different donors 🌟
 
You rallied with us to show your commitment to changing the outcome for kids facing DIPG. We stand together in taking action to show we will not accept the grim statistics and lack of options.
 
Our initial goal for the day was to raise $30,000 that would be matched by our sponsors to total $60,000. We are deeply grateful for the tremendous outpouring of support that helped us far exceed this goal.
 
We want to once again thank our generous matching sponsors who were essential to our success on Giving Tuesday. Thank you to the William & Mildred Kaplan Charitable Foundation, Tough Like Jack Foundation, Anndreya & Zach Harris, and an anonymous donor for committing the initial $30,000 in matching funds. And thank you to a generous family of one of Michael’s classmates and two more anonymous donors who added another $10,000 of matching after we reached our initial goal.
 
We work to honor all children who have faced this devastating disease. And we work for the children who will be diagnosed in the future. Together, we WILL Defeat DIPG.
 
Thank you from your Defeat DIPG® Network friends.
 
Michael Mosier Defeat DIPG Foundation
Anthony’s Avengers Defeat DIPG Foundation
Avery Huffman Defeat DIPG Foundation
Connor Man Defeat DIPG Foundation

For George: A Sister’s Tribute to Her Brother 60 Years After He Passed from DIPG

We are deeply grateful to Irene B. Kennedy for sharing these heartfelt and moving words about her brother George:

My brother, George, was born and subsequently died from DIPG, several years before I was born. Unfortunately, I never had the good fortune of meeting him or getting to know him except through the memories of our mother.

Today would have been my brother’s 65th birthday.

George Cheney, Jr. was born November 29, 1952 and earned his angel wings April 26, 1958, almost 60 years ago.

I’ll celebrate the memories of him that my mother shared with me most often.  George was an adorable little boy, with a radiant smile that captured the hearts of all that knew him. If mom happened to be napping, or if George awoke before her in the morning, he would play quietly so as not to wake her. George was always happy and tried to radiate that feeling unto others.

Too many children have been taken from families because of DIPG, with little progress made in finding a cure since my brother lost his life in 1958 at the age of 5. Now, 59 years after George’s passing, I’m reading about your child Michael, Avery Huffman, Katherine King, Chad Carr and so many more!

I remember my mother telling me that she would stay in the radiation room comforting her scared little boy while he received radiation treatments, something that we now know isn’t allowed nor safe. Radiation was the only treatment at the time.

Sadly, not much has changed.

I remember my mother telling me, that as a last ditch effort to save their son, she and her husband traveled to the Mayo Clinic by train for a consult. Doctors there told them to take their child home and love him and comfort him as best they could, and that there was nothing further that could be done. Imagine traveling by train several hundred miles with a sick child, only to be re-told there’s nothing that could be done to save your child?

My mother grieved for her little boy every day, until she too took her last breath in 2009.

My mother lost her husband 4 years after George’s passing to a heart attack. She married again and had four more children (I was the second of the four) and nine grandchildren. As a mother now myself with two teenage boys, I understand and appreciate the bond and love a mother has for her children.

Not a day went by that she didn’t think about her little boy, and cry tears for what could have been. Growing up, it’s difficult to form a bond with a sibling you never had the joy of meeting or growing up with. Strangely enough, I think about him often and wonder myself: what could have been?

The only picture I have of my brother is a large wall mounted portrait. It is a charcoal drawing of my brother George S. Cheney, Jr. that proudly hung in my childhood home and now proudly hangs in mine. I can’t put into words, how much it means to me to know my brother will be honored after all these years. The idea that this precious 5-year-old little boy, would one day be forgotten is unimaginable.

I thank you for all the hard work you put into defeating this monster DIPG, for all families that have lost a loved one, and so that one day, other families have hope upon diagnosis. As you know, DIPG is one of the cruelest forms of cancer, if not the cruelest!

Irene Boutaikakis Kennedy 

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.”

Select Equity Group Foundation Awards $79,300 Grant to Michael Mosier Defeat DIPG Foundation

Michael Mosier Defeat DIPG® Foundation is pleased to announce the exciting news that it has been awarded a $79,300 grant by Select Equity Group Foundation.  This generous grant will be used to fund promising research aimed at transforming our understanding of the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma (DIPG), with an ultimate goal of identifying effective treatments and a cure.  DIPG impacts hundreds of children each year in the U.S. alone, typically between the ages of 4 – 11 years old. These kids face a median survival of 9 months from diagnosis and overall survival of less than 1%.

Select Equity Group Foundation’s mission is to make a positive impact by actively engaging all employees in identifying and supporting charitable organizations of excellence.  Select Equity Group Foundation uses a democratic process as the primary mechanism for its grantmaking, whereby its employees nominate charities for consideration.  Select Equity Group Foundation conducts a rigorous research process, including application by invitation and discussions with leadership before an award can be considered.  To date, Select Equity Group Foundation has awarded more than $20 million in grants to nonprofit organizations in a range of areas.

Tracy Thomas, Associate General Counsel at Select Equity Group, championed Michael Mosier Defeat DIPG Foundation during their annual celebration. We greatly appreciate Tracy’s efforts to share with her colleagues the critical need for investment in finding a cure for this devastating disease.  We also thank Robert Wilson, Executive Director of Select Equity Group Foundation, as well as all of the Select Equity Group employees who supported the award of this grant.

Michael Mosier Defeat DIPG® Foundation is a 501(c)(3) nonprofit organization that supports research initiatives designed to find a cure for DIPG brain tumors.  The Defeat DIPG Foundation Board of Directors makes funding decisions, after consideration of recommendations from its Scientific Advisory Council (SAC).  The SAC consists of preeminent doctors in the field of brain cancer and is led by Chair Darell D. Bigner, M.D., Ph.D., Director of The Preston Robert Tisch Brain Tumor Center at Duke University.  Defeat DIPG Foundation has experienced significant growth since its creation in 2015, with the addition of three Defeat DIPG® Network chapters across the United States in Illinois (Anthony’s Avengers Defeat DIPG® Foundation), Texas (Connor Man Defeat DIPG® Foundation), and Washington (Avery Huffman Defeat DIPG® Foundation).

There has been a significant increase in research focused on DIPG, including notable advancements of knowledge about the biology of the disease just in the past five years.  With increased access to tumor tissue, more sophisticated technology, and greater information sharing between institutions, there is hope that children facing DIPG will soon have more options and hope for extended survival.

To learn more, visit DefeatDIPG.org.

Inaugural Defeat DIPG Dream Big Gala Raises Over $410,000

The Inaugural Defeat DIPG Dream Big Gala, presented by NextGen LED and District Design + Development was a tremendous success!  We are still tallying numbers and adding in the offline donations, but we are able to announce that thanks to our sponsors, attendees, and other supporters, the Dream Big Gala raised over $410,000! All proceeds from this magical night will be dedicated to the biggest dream we have: finding a cure for DIPG brain cancer.

The positive energy and passion in this room of 500 was simply incredible. We are blown away by your generosity and commitment to sticking with the fight to Defeat DIPG as long as it takes.  We are already looking forward to gathering together again in 2018.

We want to thank the participants in our program. Honorary Gala Chair Eric Holder, the 82nd Attorney General of the United States, delivered a passionate opening that set the stage for our program, and we were so grateful for his heartfelt remarks. Master of Ceremonies Tommy McFly kept our audience engaged with his warm and upbeat personality and expertly managed the program. Laurel Simer, the 1st recipient of the Michael Mosier Big Hero Award, captured everyone’s hearts with her incredibly inspiring story of fighting DIPG since she was 10 years old.

The Live Auction was run by the talented auctioneer Ernie Rogers, who did a truly fantastic job! We were so fortunate to have Jeff Hanson Art present for the event, with his beautiful one-of-a-kind painting, “That Night in Tuscany,” which generated an incredible $27,000 for DIPG research! Chef Spike Mendelsohn was a wonderful part of our program, representing Santa Rosa Taqueria, one of our Gold Imagine Sponsors, and auctioning off not one, but TWO, dinners for 12 that he will host at the restaurant… which generated another $16,000 to help find that cure!

We were so thankful for the design and production contributions of Lisa Barry, who truly raised the entire event to a different level with her graphics and special touches. Thank you to Rob Poznanski and Contend for their incredible production of the moving event video that shared the stories of children with DIPG and why we have hope that we are going to beat this monstrous disease.

Thank you, also to the other contributors to our Live Auction, including Lauren Phillips & Family; Maggie O’Neill, National Association of Broadcasters/The LeGeyt Family; John Carlson; Jacoba & Marshall Urist; and Jen Dokas.

We are so grateful to the sponsors and in-kind donors who supported the Defeat DIPG® Dream Big Gala and the fight for a cure for DIPG brain tumors. Please take note of their generosity, support their businesses, and let them know how much you notice and appreciate their work to Defeat DIPG!

Presenting “Visionary” Sponsors
Nextgen Partners/NextGen LED
District Design + Development

Gold “Imagine” Sponsors
DARCARS Automotive Group
Whole Foods Market
Santa Rosa Taqueria
D*MNGOOD

Table Sponsors
Debevoise & Plimpton LLP
Greenleaf Health
K&L Gates
Washington Metro Homes/Asif Qadir

Supporters
Dominos Team Washington
KIDBALL
Next Level Rentals LLC
Sports and Orthopaedic Therapy Services, LLC
Pepco
Regina Dinisio Spallina, Rodan & Fields, Independent Consultant
Bashi & Roger Packer
Sharis & Thorn Pozen
The Seitz-McLeese Family
The van Agtmael Charitable Foundation
Jason & Katie Yanushonis

IN-KIND DONORS
Photography: KaGe Photography & Sarah Marcella Photography

DJ: Electra Entertainment

Event Video: Contend

Event Production/Content Design: Barry Aristic/Lisa Barry

Programs: In Touch Printing

Signage: BaseCamp DC

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Stanford Researchers Stop DIPG Growth By Blocking Neuroligin-3 Protein

Researchers at the Stanford University School of Medicine, led by Dr. Michelle Monje, have discovered that DIPG tumors stop growing when the tumor cells do not have access to a protein known as neuroligin-3.  The researchers also showed in a mouse model of DIPG that a class of drugs known as ADAM10 inhibitors can block neurologin-3 and stop the growth of DIPG tumors.  These results were recently published in Nature, and have generated significant media coverage because it provides hope of possible treatment for DIPG.

We recently discussed the paper with Dr. Monje.  Here are her views on the potential impact of this study.  

Defeat DIPG: This paper seems to build on your prior work by showing that a molecule known as neuroligin-3 plays an important role in driving DIPG tumor growth. Can you explain what neuroligin-3 is? What role it plays in normal cells? And how it drives tumor growth?

Dr. Monje: We had previously discovered that the activity of normal brain cells called “neurons” drives DIPG growth. We found two factors that are released as a result of neural activity that promote the proliferation of DIPG cells, a known growth factor called brain-derived neurotophic factor (BDNF) and, unexpectedly, a protein called neuroligin-3.  Neuroligin-3 is a molecule present at the connection between neural cells called a “synapse”. Synapses are the place where communication between brain cells takes place, and neuroligin-3 helps to hold this connection together. It is a long molecule that sticks out of the cell and binds to another similar molecule on the other cell, sort of like holding hands.  As a result of brain activity, neuroligin-3 is cleaved and released from the cell. We don’t yet know why this happens, but it is likely part of the activity and experience-dependent plasticity of the brain. When neuroligin-3 is released, it can interact with DIPG cells infiltrating the brain, and it acts as a powerful growth signal for DIPG cells.  We were startled to realize that DIPG and other high-grade gliomas depend on this molecule to a dramatic extent. The tumors don’t grow without its presence in the brain.

We have determined that the enzyme that cleaves neuroligin-3 a protease called ADAM10. If we block neuroligin-3 release by inhibiting ADAM10 function, this strongly reduces DIPG growth in the brains of mice.

Here is a more technical explanation:

Neuroligin-3 is a post-synaptic adhesion molecule, meaning that it is present on the membrane of post-synaptic cells (most of the protein sticks out of the cell) and normally adheres to a binding partner on the presynaptic membrane to stabilize synapses between cells. Neuroligin-3 is thus important for synaptic function as well as synapse formation and remodeling in the normal brain. We discovered it is released as a result of neuronal activity and that, quite unexpectedly, is a potent mitogen for high-grade glioma cells such as DIPG. Neuroligin-3 stimulates numerous oncogenic signaling pathways in DIPG and other glioma cells, including Focal Adhesion Kinase (FAK) and downstream PI3K-mTOR, SRC and RAS pathways.

We had shown back in 2015 that neuroligin-3 is a potent growth factor released in the glioma microenvironment, and expression levels of neuroligin-3 correlate inversely with survival in a large database of glioblastoma patients. But at that time we did not know the relative importance of neuroligin-3 to glioma growth. Even with respect to the influences of neuronal activity on DIPG growth, we know that BDNF is also important, and there are numerous other factors in the microenvironment or intrinsic to DIPG cells that can promote growth. So to test the role of neuroligin-3, we combined a genetic mouse model that lacks neuroligin-3 with a mouse model that can accept human cell xenografts and then tested how patient-derived xenografts of DIPG and other high-grade gliomas grow when neuoligin-3 is lacking in the brain microenvironment. We were startled to find that that the xenografts simply did not grow. The profound growth stagnation of DIPG and other high-grade gliomas indicates that neuroligin-3 is necessary for something fundamental to glioma progression. While we have shown that it stimulates numerous important pathways for cell proliferation, I suspect there is substantially more we need to understand about its role in glioma and the reasons for its necessity to DIPG growth. Some hints about this were gleaned from the gene expression changes observed after neuroligin-3 exposure, but we still have a great deal of work to do.

Defeat DIPG:  Should we be concerned about blocking neuroligin-3?  Does normal brain cells need this protein to function properly?

Dr. Monje:  Neuroligin-3 knock out mice exhibit largely normal brain function, because other neuroligin family members compensate for neuroligin-3 loss in normal cells. Interestingly, only neuroligin-3, but not neuroligin-1, 2 or 4 influences glioma growth.

Defeat DIPG: The paper shows that a class of drugs known as ADAM10 inhibitors are effective in decreasing neuroligin-3, which then slows tumor growth. Can you explain what ADAM10 inhibitors are, and how they affect tumor growth?

Dr. Monje:  Because neuroligin-3 has such a strong effect on DIPG growth, it represents an important target for therapy. One way to target neuroligin-3 is to block its cleavage and release into the glioma microenvironment, so we set about determining the protease responsible for cleavage of neuroligin-3 at the membrane. Using a combination of computational prediction tools, pharmacological protease inhibitors and genetic mouse modeling, we found that an enzyme called ADAM10 is responsible for neuroligin-3 secretion. When we treated mice bearing xenografts of patient-derived DIPG or pediatric glioblastoma, ADAM10 inhibition blocked tumor growth.

Defeat DIPG:  As we understand it, ADAM10 inhibitors are not yet FDA approved for any use, but that there are several ongoing clinical trials testing these drugs for use in other cancers. What have we learned about these inhibitors from those trials? Do we have any idea whether these inhibitors effectively cross the blood-brain barrier?

Dr. Monje:  There have been two ADAM10 inhibitors in clinical trials for breast cancer and lymphoma. These were well-tolerated in adults, but development stopped when ADAM10 inhibition was found to not be more effective than existing treatments for those diseases.  We tested blood-brain-barrier penetration of both ADAM10 inhibitors and found one to be superior to the other. We then tested the ADAM10 inhibitor shown to be safe in adults and found to get into the brain at reasonable concentration for a reasonable amount of time in our study. This ADAM10 inhibitor substantially reduced glioma xenograft growth.

Defeat DIPG:  What are the next steps in your research? Do you plan to test the effectiveness of ADAM10 inhibitors in combination with other drugs, such as panobinostat? Is any more lab work necessary before DIPG patients can be treated with these inhibitors?

Dr. Monje:  We are presently in discussions with the company who owns this ADAM10 inhibitor compound. We would like to extend the preclinical studies to generate enough evidence to support a clinical trial for DIPG. It is difficult to predict the timeline, but we hope to translate this as quickly as we possible can for children with DIPG and other forms of high-grade glioma.

It should be noted that loss of neuroligin-3 signaling in DIPG and other gliomas causes stagnation of growth, but not glioma cell death.  Targeting neuroligin-3 with ADAM10 inhibition could be complementary to cytotoxic therapies. A theory that we need to test experimentally is the idea that growth stagnation caused by blockade of neuroligin-3 secretion could help to prevent the evolution of therapy resistance that we have observed with agents such as panobinostat.

Defeat DIPG:  Thank you Dr. Monje.  We appreciate your efforts to find effective treatments for DIPG.  We hope that DIPG children will soon benefit from your research and can be treated with ADAM10 inhibitors.

Yahoo Employee Foundation Awards $22,000 Grant to Michael Mosier Defeat DIPG Foundation, Inspired by Devin Suau

Michael Mosier Defeat DIPG® Foundation is deeply grateful to the Yahoo Employee Foundation, a corporate advised fund with the Silicon Valley Community Foundation, for donating $22,000 that will be dedicated to research for treatments and a cure for the deadliest form of pediatric brain cancer:  DIPG brain tumors.

Though it ceased operation earlier this year, the Yahoo Employee Foundation (YEF) was a grassroots, philanthropic organization that gave Yahoo employees easy and accessible ways to give back to their communities.  YEF was 100% funded and led by employee volunteers, and funded causes that were most meaningful to the Yahoo employee population.

Earlier this year, Michael Mosier Defeat DIPG Foundation was grateful to be nominated for consideration for a YEF grant, as a direct result of the inspiration of Yahoo employees by a six-year-old boy named Devin Suau, whose father and uncle work for Yahoo.  Devin was diagnosed in January 2017 with diffuse intrinsic pontine glioma (DIPG), a brain tumor with less than 1% overall survival that impacts 200-400 children each year in the U.S. alone.  Devin’s family started the #whynotdevin movement, to involve others in Devin’s fight and to raise awareness of this devastating disease.  Devin’s Army of family, friends and supporters believe any child should be able to beat DIPG, so why not Devin?

After watching Devin’s bravery, and learning about the significant need for more resources to improve the prognosis for children with DIPG, Yahoo employees advocated for the award of this important grant that will be dedicated to innovative research focused on DIPG.

We thank all who helped make this grant possible.  For Devin, and thousands more who have faced and will face DIPG, our Foundation will remain steadfast in its mission to fund DIPG research and contribute to progress against this deadly disease.  The Foundation expects to announce a new round of Defeat DIPG® research grants by the end of 2017.

Learn more by visiting DefeatDIPG.org or following us on social media at @DefeatDIPG.  You can read further about Devin and follow his journey through the #whynotdevin Facebook group or @WhyNotDevinDIPG on Twitter.  You can also learn more about Devin at https://www.defeatdipg.org/meet-the-kids/devin-suau/.

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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.