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.

Twenty States Recognize May 17th as DIPG Awareness Day

For the first time in history, at least 20 states will recognize May 17th as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day, to raise public awareness of the deadliest childhood brain cancer. DIPG is the leading cause of childhood death due to brain tumors and typically strikes school-age children. The “DIPG Across the Map Initiative,” organized by Michael Mosier Defeat DIPG Foundation, coordinated families and foundations across the country to elevate awareness of this devastating childhood cancer.

As a result of the DIPG Across the Map Initiative, Governors in the States of Arizona, Connecticut, Georgia, Illinois, Iowa, Kansas, Kentucky, Maryland, Massachusetts, Michigan, Mississippi, Nebraska, Nevada, Pennsylvania, Virginia, Washington, and Wisconsin issued Proclamations establishing DIPG Awareness Day as May 17, 2017.  In Louisiana, Tennessee, and Texas, DIPG Awareness Day was established through the legislature. Additional states still have requests under consideration.

“We thank the Governors and legislatures that have established DIPG Awareness Day on May 17, 2017 for their strong leadership.  Through these Proclamations, they are giving a voice to children who are unable to advocate for themselves.  Recognizing this devastating disease is an important milestone in the quest to promote awareness of one of the leading causes of disease death for our children,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation, “We have been honored to work with DIPG families, foundations, and advocates across the country on the DIPG Across the Map Initiative, to honor all of the young children who are fighting this cancer or have lost their lives too soon after brave battles with DIPG.”

The DIPG Across the Map Initiative started after Governor Larry Hogan established Maryland’s first-ever DIPG Awareness Day on May 17, 2016 through the effort of Michael Mosier Defeat DIPG Foundation. The date was selected because it fell anniversary of the passing of six-year-old Michael Mosier from Bethesda, Maryland, for whom the nonprofit organization was named.  Following Governor Hogan’s issuance of the 2016 Proclamation, a Pennsylvania nonprofit, Aidan’s Avengers, also succeeded in establishing May 17, 2016 as DIPG Awareness Day in Pennsylvania.

On the heels of this recognition in Maryland and Pennsylvania, on September 1, 2016, Michael Mosier Defeat DIPG Foundation launched the DIPG Across the Map Initiative.  The project had two central pillars:  (1) by banding together to advocate for the same day in multiple states they would be able to gain more momentum and draw even more attention to DIPG on a unified awareness day, and (2) while every family and advocate should use their own personal story to urge their state government to adopt DIPG Awareness Day, the proclamations we seek should not be child-specific to ensure they include and represent all children who have faced or are facing this disease.

DIPG Awareness Day falls during brain tumor awareness month. Brain tumors are now the leading cause of childhood cancer death for children under 19 years old. DIPG is the deadliest childhood brain tumor, impacting 200-400 kids in the U.S. each year, 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.

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.

The 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).

Researchers Identify Potential New Treatment for DIPG

Researchers at Northwestern University have determined that a class of drugs known as BET inhibitors may provide an effective treatment for DIPG.  These researchers treated mice with BET inhibitors and found that, after ten days of treatment, the mice’s tumors were significantly smaller.  The results of these study were recently published in Nature Medicine, and has generated significant media coverage.

We recently had the chance to discuss this paper with the lead researchers: Andrea Piunti, Rishi Lulla, C. David James, and Ali Shilatifard.  Here is what we discussed.  

Defeat DIPG:  Your study shows that drugs known as BET inhibitors appear to be an effective treatment option for DIPG tumors with the H3K27M histone mutation. Can you briefly explain to us what BET inhibitors are and how they work?

Northwestern:  BET inhibitors (Bromo and ExtraTerminal domain inhibitors) are a class of drugs that aim to disrupt the binding of bromdomain proteins from chromatin. Chromatin is a mix of proteins and DNA. The most abundant protein in chromatin is the histone. In most DIPG tumors, one of these histones has a mutation which makes a normal H3 into a mutant H3K27M.

In our work we characterized where in the genome (DNA) of DIPG cells, the H3K27M histones containing nucleosomes are localized. We found that those are often present in genes that are highly active in those tumors and create an aberrant gene network that fuels the tumor. The H3K27M containing nucleosomes also bind the bromodomain proteins. We hypothesized that, given the well-known role of these proteins in regulating the gene network, inhibiting the binding of these proteins to H3K27M containing nucleosomes could impair the tumor growth by disrupting the gene network. Indeed, treatment with BET inhibitors results in the disruption of the aberrant gene network and dramatically decreases the tumor proliferation in our model.

Defeat DIPG:  As part of your study, you used a mouse model and injected BET inhibitors directly into the mice’s brain tumors, and you found that these injections significantly reduced tumor size. Does this approach suggest that BET inhibitors will need CED to be effective in DIPG patients?  Or is there evidence that BET inhibitors can sufficiently cross the blood-brain barrier to be effective in DIPG patients?  

Northwestern:  We tested two BET inhibitors for activity against human DIPG tumors in the brainstems of mice: JQ1 and I-BET-762.  JQ1 was administered by intraperitoneal injection whereas I-BET-762 was administered orally.  Each inhibitor-route of administration combination slowed the growth of DIPG xenograft tumors, indicating that systemic administration of either inhibitor had access to tumors engrafted in the brainstem of mice.   We did not do CED in this study but it is an interesting possibility, as it would certainly increase the concentration of inhibitor in the tumor, and potentially heighten BET inhibitor anti-tumor activity.  The BET inhibitors we are considering for clinical trials do cross the blood-brain-barrier in pre-clinical models.

Defeat DIPG:  As we understand it, BET inhibitors are not yet FDA approved for any use, but there are several ongoing clinical trials testing these drugs for use in other cancers. What have we learned about BET inhibitors from those trials? Will the results of those trials have any effect on DIPG children getting access to BET inhibitors?

Northwestern:  The BET inhibitors are in Phase I clinical trials in adult patients and we are learning about the safety, best dosing and side effects.  The results of these trials will affect our plans for treating pediatric patients – to guarantee that we perform the trial in the safest possible manner.

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

Northwestern:  The history of targeted small molecule inhibitors in treating cancer indicates that tumors adapt and acquire resistance to sustained small molecule inhibitor when used alone.  We are interested in determining if this is the case for treating DIPG with BET inhibitors, and if so, characterizing the molecular changes that occur in tumors that acquire resistance in order to identify additional therapeutic targets that can be targeted.  We are also working with combination therapies in the lab to improve effectiveness or prevent tumors from acquiring resistance to BET inhibitors.

Defeat DIPG:  What is your best guess for how long it will be before DIPG patients are treated with BET inhibitors? What steps need to occur before this is possible?

Northwestern:  It is hard to say for sure, but we are hopeful that as soon as the Phase I clinical trials in adults have been completed, we will be able to open a Phase I clinical trial in pediatric patients.  We are working with several drug companies to make this happen as quickly as possible – we hope that it can be sometimes before the end of 2017.

Defeat DIPG:  Thank you Drs. Piunti, Lulla, James, and Shilatifard.  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 BET inhibitors.

Congress Passes 21st Century Cures & House Passes Childhood Cancer STAR Act

Today, the U.S. Senate passed the 21st Century Cures Act with a 94 – 5 vote, and with it, reauthorization of the Creating Hope Act Pediatric Priority Review Voucher Program.  This program creatives incentives for companies to research and develop drugs for children with cancer and other life threatening illnesses.  It has been very successful to date, generating nearly $1 billion in incentives.

Beyond the Creating Hope Act, the Cures Act authorizes $4.8 billion in additional funding for the National Institutes of Health (NIH), including $1.8 billion to fund the National Cancer Moonshot initiative.  We are hopeful that childhood cancer will benefit from these funding streams.  In addition, the Cures Act includes new compassionate use standards and mental health provisions, which could benefit the pediatric population.

In addition, yesterday the House of Representatives passed the Childhood Cancer STAR Act, which will now go to the Senate for consideration.  The STAR Act will advance pediatric cancer research and child-focused cancer treatments and also address survivorship issues for children.  The STAR Act contains provisions to enhance pediatric brain tumor research, including improving access to tissue samples.  You can help by urging your Senators to support passage in the Senate.  Through this map, you can see if your Senator is supporting the STAR Act and find contact information for calling, emailing or tweeting to urge their support.

There remains an incredible amount of work to do, but these are great developments for the fight against childhood cancer.

We thank the Cures Act and STAR Act sponsors and supporters in both the House and Senate for their leadership in championing this legislation, including Majority Leader Mitch McConnell, Minority Leader Harry Reid, Chairman Lamar Alexander, Ranking Member Patty Murray, Senators Bob Casey and Johnny Isaakson, and Representatives Fred Upton and Diana DeGette, Michael McCaul, G.K. Butterfield and Chris Van Hollen.

#Give2DefeatDIPG Initiative for #GivingTuesday Raises Over $100,000 for DIPG Research

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We are thrilled to announce that the Defeat DIPG Network raised OVER $100,000 with our #Give2DefeatDIPG initiative for #GivingTuesday on November 29, 2016!  Due to the generosity of many supporters, we more than doubled our initial #Giving Tuesday goal of raising over $50,000 for childhood brain cancer research!

All funds raised will be used to fund research for a cure to DIPG brain tumors, the leading cause of pediatric cancer death.  Over 550 individual donors contributed to raise more than $65,000 of this total, with matching donors adding $35,000.

We again thank our incredible partner, the William & Mildred Kaplan Charitable Foundation, which was the first to support our #Give2DefeatDIPG initiative by matching our initial $10,000 in donations, with anonymous donors adding another $25,000 for matching!

We are so grateful for each and every person who donated, shared our initiative, and worked with us to help us make a difference in the fight to Defeat DIPG.

Executive Director Jenny Mosier Participates In Scientific Peer Review of Cancer Research Applications To Help Determine $50 Million in Research Funding by the Department of Defense

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Cancer advocate Jenny R. Mosier recently participated in the evaluation of research applications submitted to the Peer Reviewed Cancer Research Program (PRCRP) sponsored by the Department of Defense. Ms. Mosier, Executive Director of Michael Mosier Defeat DIPG™ Foundation, was nominated for participation in the program by the National Brain Tumor Society. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $50 million appropriated by Congress for Fiscal Year 2016 (FY16) will be spent on future research on eleven specific cancers: bladder, colorectal, kidney, liver, stomach, and pancreatic cancer; lymphoma; melanoma and other skin cancers; mesothelioma, neuroblastoma, pediatric brain tumors; and Listeria vaccine for cancer and immunotherapy research.

 

Consumer reviewers are asked to represent the collective view of individuals living with these cancers, family members, and those who may be affected in the future when they prepare comments on the impact and/or military relevance of the research on issues such as prevention, screening, diagnosis, treatment, and quality of life after diagnosis.

 

Commenting on serving as a consumer reviewer, Ms. Mosier said that “Participation as a peer reviewer for the Peer Reviewed Cancer Research Program offers the unique and meaningful opportunity to ensure the voices of those who suffer from the disease are heard. By interacting directly with the scientific reviewers considering grant applications, we can ensure that patient concerns inform evaluation of these important research grant applications. I am grateful to the National Brain Tumor Society for nominating me for this position and to my fellow panel members for the robust and productive discussion.”

 

 

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications proposed for these specific cancers since 2009. To date, more than 120 consumer reviewers have served on panels alongside scientists in the review process for the program. Colonel Wanda L. Salzer, M.D., Director of the Congressionally Directed Medical Research Programs, expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions: “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research.”

 

Scientists applying propose to conduct innovative cancer research aimed at improving the lives of all individuals living with these cancers and their families. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.

 

More information about the Department of Defense Peer Reviewed Cancer Research Program is available at the Website: http://cdmrp.army.mil.

For a printer-friendly copy of this release, please CLICK HERE.
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Media Contacts:
Gail Whitehead, Public Affairs, 301-619-7783
patricia.g.whitehead4.ctr@mail.mil

 

Jenny Mosier
Executive Director, Michael Mosier Defeat DIPG Foundation, 240-903-0827
jenny@defeatdipg.org

 

 

 

 

 

“Helping Families Facing the Unimaginable,” from the Make-A-Wish Wish Nation blog, by Jenny R. Mosier

Executive Director Jenny R. Mosier was honored to be featured as a guest writer on the Make-A-Wish Foundation’s Wish Nation blog.  Check out her piece, “Helping Families Facing the Unimaginable,” at THIS LINK.  Michael Mosier Defeat DIPG Foundation is pleased to work together with Make-A-Wish Foundation, whose mission is to grant a wish to every child facing a life-threatening medical condition.

Michael Mosier Defeat DIPG Foundation Donates $100,000 to DIPG Collaborative for DIPG Research

It is the Second Anniversary of our “Before & After Day.” We think it is the perfect day to announce our initial grant for 2016, which will be a contribution of $100,000 to the DIPG Collaborative.

On September 4, 2014, we learned that our six-year-old son Michael had DIPG, a brainstem tumor that was inoperable with no effective treatments. It is the before and after day because right then, on that day, our family, our minds, hearts and souls, and our entire view of the world would never be the same again. It is the day that I laid in a hospital bed to sleep next to my son and cried the entire night, trying not to wake him with the full-body shaking from my sobs. It is the day we tried to push out of our minds the horror of our daughter, Lila, growing up without her big brother. It is the day that we learned that DIPG would destroy our lives.

But we are not done, and DIPG is not going to win.

With our $100,000 investment, we are pleased to be making an impact alongside our Collaborative partners by helping to fund DIPG research projects that will be shared in more detail in upcoming weeks. Last year’s funding through the Collaborative included DIPG projects at institutions such as Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, Stanford University, Children’s National Medical Center, and Cincinnati Children’s Hospital, to name just a handful.

This is just the beginning for our research initiatives, and we will be eager to share with you more news about additional research grants from Michael Mosier Defeat DIPG Foundation that we expect during the next several months.

On a day that has such harsh memories for our family – of a cold hospital meeting room where we learned the devastating fate of our firstborn child – we want to turn the tables and do something positive that we hope will one day save another family from that same experience.

This is our motivation, and it is one shared by the Huffman family and Olympia family who have joined us as part of the Defeat DIPG Network in Washington state and Texas, respectively. If a family must get the news that their child has DIPG, we want it to be followed with a list of potential treatments and with HOPE for their child’s survival and bright future.

Please remember the difficult reality: We are not fighting so hard for our own child. We are fighting for yours. We are fighting for the family that has absolutely no idea that tomorrow they will learn their child has a brain cancer with near 0% survival.

On behalf of Michael Mosier Defeat DIPG Foundation, and our partners at Avery Huffman Defeat DIPG Foundation and Connor Man Defeat DIPG Foundation, we want to say: THANK YOU. We appreciate your trust and continued support. We can assure you that we take nothing more seriously than making the best use of every single dollar we have to put towards a cure.

This is just the start . . . Stick with us because there is so much more ahead, and we cannot do it without you.

Together, we will #defeatDIPG. defeatdipg.org/donate

#EveryDay #AskMeAboutDIPG #AveryStrong#AmazingConnorMan