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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