Defeat DIPG Makes Grant to Oncoceutics to Support Development of ONC201

Michael Mosier Defeat DIPG Foundation has made a grant to support development of ONC201, an experimental drug currently being tested to treat DIPG.  We have made this grant in collaboration with the Musella Foundation, The Cure Starts Now, Cancer Commons, and xCures.

Our objective in funding this program is to increase the availability of ONC201 for DIPG patients.  The first goal is to facilitate enrollment in ONC201 clinical trials for any patient who is eligible for a trial.  But we also recognize that many DIPG patients will not be able to enroll in a trial.  For those patients, our goal is to assist them in getting access to ONC201 through an expanded access program where medically appropriate.

Oncoceutics has issued the following press release to announce the grant.

Philadelphia, PA (September 10, 2018) – Oncoceutics, Inc. announced the receipt of a Small Business Innovation Research (SBIR) Phase IIB Bridge Award from the National Cancer Institute (NCI).  The NCI SBIR Bridge Award will allow Oncoceutics to expand and accelerate its clinical trials evaluating ONC201 in patients with a specific type of lethal brain cancer called H3 K27M-mutant glioma.

The awarded project, “Adaptive Clinical Efficacy Evaluation of ONC201 in Recurrent High-Grade Glioma” (grant number 2R44CA192427-04), builds upon the work supported by previous NCI SBIR Fast-Track grant that supported Oncoceutics’ effort demonstrating the activity of ONC201 in high-grade gliomas, including those with the H3 K27M mutation that is commonly present in the midline region of the brain. Each year, the NCI’s SBIR Development Center presents the Phase IIB Bridge Award to a select number of companies based on NCI and external expert review of the scientific merits and commercial potential of the technology. Awardees are required to allocate third-party investment to match the Bridge funding prior to submitting the funding application which occurred in mid-2017. The NCI Bridge Award will provide $3 million to Oncoceutics to advance the clinical development of ONC201 over the next 3 years.

Patients with H3 K27M-mutant glioma often have significant neurological symptoms from their disease and lack proven therapeutic options other than palliative radiotherapy. However, emerging clinical results have shown that some patients treated with single agent ONC201 have stable disease, have had their tumor shrink, and/or have had improvements in neurological symptoms, such as paralyses of peripheral and cranial nerves. This has been observed in adults and children treated with ONC201, including children with diffuse intrinsic pontine glioma (DIPG), a type of high-grade glioma that almost uniformly (80-90%) harbors the H3 K27M mutation.

“We are extremely pleased to see continued support from the NCI for the ONC201 clinical program in H3 K27M-mutant gliomas based on the clinical activity observed in our Phase II study supported by the Fast-Track SBIR grant,” said Patrick Wen, MD, Director, Center For Neuro-Oncology, Dana-Farber Cancer Institute.

“The emerging clinical experience with ONC201 to treat gliomas at our institution and other leading cancer centers around the country is exciting,” added said Yazmin Odia, MD MS, Lead Physician of Medical Neuro-Oncology, Miami Cancer Institute. “The dismal prognosis of midline gliomas and the dearth of therapeutic options means that this therapy could be practice-changing for neuro-oncology. We are eager to follow up on the radiographic and clinical improvements in biomarker-defined patients that we have seen with ONC201 as a single agent in our ongoing clinical trials. Future co-operative group efforts between NRG Oncology and the Children’s Oncology Group to test this drug in children and adults with newly diagnosed H3 K27M-mutant midline gliomas are in the planning process.”

In addition to the support from the NCI, Oncoceutics has also received support from The Musella Foundation, a non-profit organization that helps brain tumor patients through education, advocacy, and financial support. The Musella Foundation has supported Oncoceutics’ development of ONC201 in high-grade gliomas for several years from bench to Phase II clinical trials. The Musella Foundation, in collaboration with Cancer Commons, Michael Mosier Defeat DIPG Foundation, The Cure Starts Now Foundation and xCures, has committed to contribute at least $1 million in hopes of accelerating the development of ONC201.

“Having represented and supported brain tumor patients’ interests for several decades, it has been frustrating to experience the failures of new treatments that have been developed to impact the outcome of this disease,” said Al Musella, Founder and President of the Musella Foundation. “As highlighted in a recent ODAC meeting, the FDA, in collaboration with the NCI, is tasked with determining whether a molecular target is or is not considered substantially relevant to the growth or progression of pediatric cancer. We are excited to work with Oncoceutics that is developing a molecularly targeted agent, ONC201, that demonstrates the potential to advance the concept of Precision Medicine in patients that harbor the H3K27M mutation, a genetic aberration that is considered substantially relevant for the outcome of this disease.  We are looking forward to contribute to making this drug available for as many patients as possible.”

About Oncoceutics

Oncoceutics, Inc. is a clinical-stage drug discovery and development company with a novel class of compounds that selectively target G protein-coupled receptors for oncology. The first lead compound to result from this program is ONC201, an orally active DRD2 small molecule antagonist that is well-tolerated and effective against advanced cancers. The company completed a successful Phase I study in solid tumors and has underway a number of Phase I/II and Phase II clinical programs in both solid and hematological malignancies. Oncoceutics and collaborative groups have received more than $7 million in grants over the last two years, including grants from the National Cancer Institute, the U.S. Food and Drug Administration, the Pennsylvania Department of Health, and The Musella Foundation. In addition, outside interest in the company’s portfolio has resulted in several R&D alliance agreements between Oncoceutics and leading comprehensive cancer centers, including The University of Texas MD Anderson Cancer Center and the Fox Chase Cancer Center. The company has established a robust intellectual property position, including several issued patents. Visit oncoceutics.com for more information.

About The Musella Foundation

The Musella Foundation For Brain Tumor Research & Information, Inc is a 501(C)3 nonprofit public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research. Visit virtualtrials.com for more information.

About Cancer Commons

Cancer Commons is a nonprofit collaborative of patients, physicians, and scientists, dedicated to improving patient outcomes by tightly coupling clinical research and care. We arm patients and their physicians with the knowledge they need to achieve the best possible outcomes, help them access the relevant treatments and trials, and track their results to continuously learn. Vistit cancercommons.org for more information.

About Michael Mosier Defeat DIPG Foundation

Michael Mosier Defeat DIPG Foundation is committed to finding a cure for brainstem tumors known as diffuse intrinsic pontine gliomas (DIPG).  Nearly every day one child in the United States is diagnosed with DIPG and another child dies from it. The Foundation seeks to make a difference and defeat DIPG both by raising awareness of DIPG and by providing funding for research into effective treatments for DIPG. Visit defeatdipg.org for more information.

About The Cure Starts Now Foundation

The Cure Starts Now Foundation is a 501(c)3 nonprofit organization with international chapters in nearly 40 locations around the world.  It is has funded universal cancer cure strategies starting with cancers such as DIPG and organizes the biennial International DIPG Symposium showcasing innovative research methods. You can learn more at www.thecurestartsnow.org.

About xCures

xCures is developing an AI-based methodology and platform to run ‘Virtual Trials’, which continuously learn from the clinical experiences of all patients, on all treatments, all the time. Each patient’s treatment regimen is adaptively planned by a ‘Virtual Tumor Board’ to optimize their individual outcome, and these plans are coordinated across the whole patient population to maximize collective learning. Visit xcures.com for more information.

 

Washington Capitals Defenseman John Carlson Raises Over $115,000 for DIPG Research on Day with the Stanley Cup

Michael Mosier Defeat DIPG Foundation had a lot to celebrate on this year’s 4th of July, with over $115,000 raised to fund research for a cure for DIPG, thanks to the generosity of Washington Capitals player John Carlson and his wife, Gina.

In June, the Washington Capitals won the first Stanley Cup in franchise history.  Following hockey tradition that has developed over the years, each team member gets the chance to spend a day with the prized Stanley Cup.  John Carlson, a star defenseman on the Washington Capitals, chose to spend part of his day with the Stanley Cup to benefit Michael Mosier Defeat DIPG Foundation.

John Carlson was the highest-scoring NHL defenseman during the 2017-18 regular season and playoffs, and he has spent his whole career with the Washington Capitals since he joined the team as a first-round draft pick in 2008. Caps fans were thrilled to learn that John recently signed a new eight-year contact with the Capitals and will be continuing as a key contributor to the team’s success.

Carlson, along with his family, brought the Stanley Cup to a fundraiser organized by Michael Mosier Defeat DIPG Foundation on the grounds of Community Partner Bethesda Row.  Over 1,000 fans gathered to view the Cup and to continue the celebration of the Capitals’ victory.  Grant Paulsen, who hosts NBC’s pre- and post-game Capitals coverage and Grant and Danny on 106.7 The Fan, did an outstanding job as the emcee of the event. General admission tickets included free food and entertainment, along with a view of the Stanley Cup. Limited VIP tickets were also available and gave fans the exciting opportunity of a photo with John Carlson and the Stanley Cup.  In the first ten minutes of ticket sales, over $40,000 of tickets were purchased.  The event sold out entirely in 3 days.

The Capitals released a phenomenal video that captures some of John Carlson’s day with the Stanley Cup.  In addition to the fundraiser at Bethesda Row, Carlson visited a fire department, Children’s National Medical Center, and a Kenwood neighborhood parade (whose participants also generously contributed to Defeat DIPG Foundation as part of their event).

Beyond the significant funds raised to help find treatments for children fighting this devastating childhood brain cancer, this event offered a unique opportunity to raise awareness of DIPG to a broad audience. News outlets including Fox 5 DCNHL.com, WTOP, Bethesda Magazine, and featured the event and the work of the Foundation.

The Foundation also had the opportunity to partner with new sponsors who were valued contributors to the event.  Community Partner Bethesda Row was an essential partner and co-host. Mamma Lucia Restaurants provided complimentary food for all attendees, gift cards for VIP attendees, and a donation of all proceeds from beverages sold at the event; Medium Rare donated food and beverages for the VIP tent; and Waldorf Toyota was a generous financial supporter. Thank you to Sarah Marcella Creative for generously donating time and services for the VIP photography, Harry Greenspun for general event photos, and Everything Entertainment for their photo booths. We also are deeply grateful for the support of the Montgomery County Police Department for their support.

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Vivian Rose Weaver Defeat DIPG Foundation Announces $1 Million Donation to DIPG Research, $2 Million 2018 Goal & Lemon Face Challenge

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 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.”