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.
“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).
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.
“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.”
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 email@example.com.
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.
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.
The Avery Huffman Defeat DIPG Foundation is a chapter of the Michael Mosier Defeat DIPG Foundation. Amanda and Brandon Huffman established the Avery Huffman Defeat DIPG Foundation in honor of their 7-year-old daughter, Avery Hayden Huffman, who bravely battled against DIPG for 7.5 months before passing away on February 16, 2016. Like many families who learn of their child’s diagnosis, it was the first time the Huffman family had heard of DIPG.
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.
For more information about Avery Huffman Defeat DIPG Foundation, visit their website (https://www.defeatdipg.org/averystrongdipg-2) 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).