Kenny was diagnosed with leukemia in October 2017. After his diagnosis his uncle gave him a Camaro. We learned Kenny wanted to do things to his Camaro for his “Make A Wish”. Ellie’s Hats decided to help make Kenny’s wish come true! Our friends at Casey’s Automotive were eager to help, and helped Kenny’s wish come true. Many other businesses have helped us with this project for Kenny!
In July 2018 we donated 2 more iPads and $600 worth of gift cards to the Pediatric Specialists of Virginia Clinic. This clinic is where many of the cancer patients in Northern Virginia go to. Robert Sowell from Apple Federal Credit Union joined me on the visit.
Our 3rd Annual Pancake Breakfast was a big success. We raised over $16,000 with the help of many Allstate Owners. Check out the video 3rd Annual Pancake Breakfast
This article was posted on the NIH Directors Blog on by Dr. Francis Collins
Each year, more than 15,000 American children and teenagers will be diagnosed with cancer. While great progress has been made in treating many types of childhood cancer, it remains the leading cause of disease-related death among kids who make it past infancy in the United States . One reason for that sobering reality is our relatively limited knowledge about the precise biological mechanisms responsible for childhood cancers—information vital for designing targeted therapies to fight the disease in all its varied forms.
Now, two complementary studies have brought into clearer focus the genomic landscapes of many types of childhood cancer [2, 3]. The studies, which analyzed DNA data representing tumor and normal tissue from more than 2,600 young people with cancer, uncovered thousands of genomic alterations in about 200 different genes that appear to drive childhood cancers. These so-called “driver genes” included many that were different than those found in similar studies of adult cancers, as well as a considerable number of mutations that appear amenable to targeting with precision therapies already available or under development.
In one of the two studies reported in Nature, an NIH-funded team led by Jinghui Zhang at St Jude Children’s Research Hospital, Memphis, TN, compiled DNA data representing tumor and normal tissue from 1,699 patients with childhood cancers. Determining the DNA sequence from normal tissue allows for comparison between the mutations that were present at conception (called “germline”) and those that have arisen during life in the cancer cells (called “somatic”). These cancers included many forms of leukemia and a variety of solid tumors. Nearly all patients had received a cancer diagnosis at age 20 or younger.
The other study, led by Stefan Pfister at the Hopp-Children’s Cancer Center at the NCT Heidelberg, Germany, examined existing DNA data on tumor and normal tissue from 961 children, adolescents, and young adults. The analysis involved 24 distinct cancers, covering all the most common childhood cancers. The study also included many patients with various brain cancers, which weren’t represented in the other study.
Together, these studies offer a remarkably complete picture of childhood cancer. These so-called pan-cancer studies offer a way to analyze a massive dataset and sort out biological processes that are either common to certain cancers, or unique to an individual tumor or cancer type. While such investigations had been conducted in adult cancers, the new studies are the first to do so at this scale in childhood cancers.
By comparing DNA sequencing data in cancerous and healthy tissue, Zhang’s team uncovered 142 driver genes that are somatically altered in cancer cells. The genomic alterations included small, single-letter changes in the DNA “nucleotide” alphabet. But the majority (62 percent) represented changes in the number of copies of a particular gene in the genome or larger structural rearrangements. Interestingly, only 45 percent of these driver genes had been identified in previous studies of adult cancers.
Zhang’s team also uncovered 11 mutational signatures, which are specific mutation patterns that suggest their mechanism of origin. One of those signatures appeared quite unexpectedly to be consistent with mutational events caused by ultraviolet-light (UV) exposure. That signature occurred in eight patients with B-cell acute lymphoblastic leukemia (B-ALL), the most common type of childhood cancer. While more research is needed, the discovery makes the surprising suggestion that UV exposure, or perhaps other environmental factors that drive similar mutational signatures, may play a role in some cases of childhood leukemia.
The second study presents a remarkably similar overall picture despite analyzing distinct tumor types. Pfister’s team identified genetic alterations, including small mutations and larger copy number and structural rearrangements, in 149 cancer driver genes. Only about one-third of those genes had been associated with adult cancers previously.
Their analysis of normal and tumor tissue also indicates that about 8 percent of young people may have inherited a germline mutation from their parents that made them susceptible to cancer. That’s important because those kids may be at increased risk for developing secondary cancers and benefit from fundamentally different treatment approaches. It also suggests a significant proportion of families affected by childhood cancers may benefit from genetic counseling to determine whether other family members carry the same mutations, putting them at increased cancer risk.
Overall the studies confirm that childhood cancers often carry many fewer mutations than adult cancers. Many of the driver genes also appear to be involved in causing one specific type of childhood cancer. That’s different than adult cancers, in which mutations in particular genes often drive multiple forms of cancer.
The findings also have important implications for precision medicine treatment. In fact, an analysis by Pfister’s team suggests that about half of the childhood cancers in their study may be driven by genes for which targeted treatments are already available or in development. This discovery also highlights the need to test specifically for genes that are important in childhood cancers, many of which aren’t captured by tests designed for adults. This childhood-centered testing will help to ensure that kids receive the most-effective treatments to control their tumors.
In cases where a potentially promising, targeted treatment does not yet exist, this new list of driver genes now provides fodder for continued research and drug discovery. Toward that end, it will be important to continue to amass data on more childhood cancers and to conduct studies designed to explore the underlying biological mechanisms by which these genes drive cancer. To help speed that process along, the researchers have made all of the data from both studies freely available online to researchers and clinicians around the world.
Link to the article. https://bit.ly/2FhtAhQ
 Cancer in Children and Adolescents.National Cancer Institute, August 24, 2017.
 Pan-cancer genome and transcriptome analyses of 1,699 paediatric leukaemias and solid tumors. Ma X, Liu Y, Liu Y, Alexandrov LB, Edmonson MN, Gawad C, Zhou X, Li Y, Rusch MC, Easton J, Huether R, Gonzalez-Pena V, Wilkinson MR, Hermida LC, Davis S, Sioson E, Pounds S, Cao X, Ries RE, Wang Z, Chen X, Dong L, Diskin SJ, Smith MA, Guidry Auvil JM, Meltzer PS, Lau CC, Perlman EJ, Maris JM, Meshinchi S, Hunger SP, Gerhard DS, Zhang J. Nature. 2018 Feb 28. [Epub ahead of publication]
 The landscape of genomic alterations across childhood cancers. Grobner S et al. Nature. 28 Feb 2018. [Epub ahead of publication]
Our friends at Casey’s Automotive are helping another local family with a child battling cancer. The families really appreciate these vouchers and it is just one less thing for them to have to worry about. Ellie’s Hats and Casey’s partner and split the cost of the vouchers.
Recently we celebrated our 4 year Anniversary. A local newspaper covered the event and wrote a really nice article about all the things Ellie’s Hats does. Beers and Cheers article.
Young Ellie Whitfield was diagnosed with acute lymphoblastic leukemia in 2013; and by the time she started kindergarten at Woodburn Elementary, she’d lost her hair and was wearing hats to school every day. Her P.E. teacher, Jay Coakley, noticed how happy her hats made her, so he organized a hat drive for her.
Wanting to bring that same joy to other children suffering from cancer, as well as raise awareness of the disease, he then founded Ellie’s Hats, which collects and donates hats for them. Most come from hat drives from schools and groups, such as churches and Scouts — and in every state, plus Canada and South Africa, people knit and crochet hats for the organization.
Ellie’s Hats also helps their financially struggling families and contributes to the hospitals and clinics that treat pediatric cancer patients. So, it was with great joy that the nonprofit celebrated its fourth anniversary, Feb. 18, at Mustang Sally Brewing Co. in Chantilly.
Owner Sean Hunt met Coakley when he opened his business, and Ellie’s Hats was the first group for which Hunt held a fundraiser. “We’ve also had other events for them,” said Hunt. “It’s part of our culture, so doing this was a no-brainer. We see ourselves as a community brewery, so these relationships are what we opened the brewery to do.”
Among the celebrants were Christine and Mike Angles, who run an Allstate insurance agency in Chantilly. Two years ago, they looked for a nonprofit to get involved with locally and they chose Ellie’s Hats.
Similarly, Mary and Bryan Jewett, who own Casey’s Automotive in Chantilly, have been involved with Ellie’s Hats for 2 and a half years. They met Coakley when their children’s elementary school had a spring fling.
“And after talking to Jay about Ellie’s Hats, we thought it was such a great organization, we wanted to be a part of it,” said Bryan Jewett. “It’s a good opportunity to support someone who’s passionate about a wonderful cause. Last year, we did a car show for Ellie’s Hats and raised $4,000 through the entry fees, raffles and sales of T-shirts and hats.
“One hundred percent of the proceeds went to Ellie’s Hats, and we’re doing it again, April 22, from 12:39-3:30 p.m., at our shop in Chantilly,” added Mary Jewett. “It’s a 4260-A Entre Court, off Willard Road. All kinds of cool cars will be on display, and people dressed as Star Wars characters will be there, too. There’ll also be face painting, balloons and food trucks. It’s all free, but people can donate to Ellie’s Hats, if they want. We’ve also done hat drives for them.”
Her husband said they were happy to be at the anniversary celebration and “to see that Jay’s organization has been going strong for four years.”
More than 70 people attended the anniversary celebration, including some parents whose children have been helped by Ellie’s Hats. Sara and Marc Schweigert’s son Trevor, now 8, was diagnosed 4 and a half years ago with neuroblastoma.
“It’s been a long road, but he’s doing well,” said Marc Schweigert. “He’s been on six, different clinical trials, and one of the two at [Memorial] Sloan Kettering [Cancer Center] gave us hope that he was going to survive.”
“I met Jay at [Inova] Fairfax Hospital when our son was inpatient there,” said Sara Schweigert. “And when he knew we were going to the hospital [Sloan Kettering] in New York, he’d drop off a box of hats for Trevor to bring to his friends there. He’d also bring Trevor snacks and video games for the long drive, plus a gas gift card for us.”
And that was so special, she said. “It means so much for someone who doesn’t know us to want to help our family, when no one else understands the physical and emotional hardships we’re going through,” said Sara Schweigert. “It brings a sense of love and warmth to have someone else care like that.”
There, as well, were Jennifer and Robert Scott. They have three children, and their middle daughter, Elizabeth, now 17, was diagnosed with acute myeloid leukemia in May 2015. She was initially treated at Inova Fairfax and went into remission that August.
“But she needed a bone-marrow transplant to prevent a relapse,” said Jennifer. “We didn’t have a match, but Duke [University Hospital] had umbilical-cord blood that matched hers. So, on Oct. 2, 2015, she had a transplant there. She’s now 870 days post-transplant and doing well. She’s taking a full, academic load and looking at college and something in the medical profession as a career.”
The month before Elizabeth was diagnosed, her younger brother Michael was at his baseball team’s opening day and Coakley was collecting hats at an Ellie’s Hats booth there. A month later, said Jennifer Scott, “Jay – who’d heard about us through a mutual friend – reached out to us and was standing in our kitchen with hats and gift cards.”
“He recognized me and said, ‘I bet you never thought you’d see me again,’” said Robert Scott. “I’ll never forget that because I never knew we’d have a child with cancer and need his support.”
Jennifer Scott said Coakley was also a huge help while Elizabeth was hospitalized. “He’d show up with coffee, bottled water and friendship when we were stuck in the hospital in isolation because of different infections she had and for other reasons. It was a connection to the outside world.”
Jennifer Scott said they attended the anniversary event to thank Coakley and celebrate with him “for everything he’s done for these kids. It’s personal to him. So many people say, ‘What can I do to help?’ — and Jay shows up and does it.”
Pleased with how well the celebration went, Coakley said, “We had a great turnout, and it was a wonderful opportunity to spend some time with people who’ve done so much for Ellie’s Hats. There were sponsors, people who’ve made and/or donated hats, volunteers and families who’ve been affected by pediatric cancer. We’re now four years in, but it would be nice if we could just close up shop because we were no longer needed.”
This is just too cute. Our friend Cash seems to like the bag we sent along with hats. We have been told that our bags hold a lot of stuff 😂
This is the sweet note that Cash’s mom sent. It really is “more than just a hat.
I’m so sorry it has taken me a few days the get back to you, but we received your package and are so overwhelmed by your kindness. Thank you so much for the sweet hats for all our kids, the bracelets, the shirt, the ribbon pin, the amazing bag and the gas card. Cash and his siblings were so excited when they opened the box. It brought tears to mine and my husband’s eyes. We are so very grateful and feel so blessed to receive such a loving and caring package for our family. Thank you again….so much.
You may not know Ellie’s Hats does more than send hats to children battling cancer. With the help of Casey’s Automotive we were able to give out 22 $200 checks to some of the families we have met. We know that having a child with a life threatening illness can be very costly so we hope the checks will help.
Saturday April 22nd I was on the Fox 5 DC Weekend show with Bryan and Mary Jewett to talk to Annie Yu about Ellie’s Hats and the event Casey’s Automotive was hosting for Ellie’s Hats. While were a little nervous about being on live TV Annie made us a lot more comfortable with her genuine interest in Ellie’s Hats. This is the 2nd time Fox 5 has done a story about Ellie’s Hats and the 3rd time we have been on Fox 5. Each time the people from Fox 5 showed a real interest in what Ellie’s Hats is all about.
Here is a link to the segment. Fox 5 segment