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.

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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).