We are walking (and rolling) AGAIN to raise money for Childhood Cancer Research, this time at the CureSearch Walk this Sunday, Oct. 19th in Fairfax! We’d love you to join our team and walk with us or consider supporting us by sharing our page or donating if you can! Click on the link below for our team page and more info!
Fighting Cancer By Fixing Our Cells’ Hard Drives
It’s pretty much standard practice in cancer research to search for genes that could serve as leads for new tumor-fighting drugs. But Cigall Kadoch, a 29-year-old assistant professor of pediatric oncology at the Dana-Farber Cancer Institute (yes, that means she’s already on the tenure track at Harvard) is following a new lead for anti-cancer medicines: exploring the genes that regulate the molecular structure of DNA itself.
Kadoch will be on stage at the Forbes Under 30 Summit on October 21, as part of a panel on the future of medicine, called Tomorrow’s Medicine Today.
A quick review of basic biochemistry: DNA is a molecular ladder in which a code made of molecules called bases (adenine, thymine, cytosine, and guanine or A, T, G, C) create recipes for all of the proteins that make up every part of the body, as well as instructions for when to make them.
But as with a computer’s hard drive, the code isn’t all that matters. The physical structure that reads the code and translates it for the body matter, too.
This DNA-reading structure, called chromatin, is constantly being modified as a way of determining what bits of DNA code get read. And the chromatin remodeling complex, which makes these modifications, is itself controlled by genes written into the DNA.
Kadoch, as a graduate student at Stanford, found that genes related to a chromatin remodeling complex called BAF, were, when mutated, the cause of a rare pediatric cancer: synovial sarcoma, usually found around major joints. Approximately 800 new cases occur in the U.S. each year.
Now, she has a 12-person team in her Boston lab looking for new drugs targeted at BAF, which might help not only kids with synovial sarcoma but also other patients. Kadoch guesses that 25% of cancers might be caused in part by BAF-related mutations. “It’s an amazing thing going from leading your own efforts to leading with a whole group behind you,” she says.
Doctors Helping Kids Fight Cancer
Dr Andrew Pendleton makes his rounds. The Pediatric Cancer Specialist at Memorial Health says for these kids, its not just about the medicine, but their attitude.
“The most important thing is hope,” explains Dr Andrew Pendleton. “The 4 letter word hope. All the majority of patients will be cured depending on the type of cancer, but there is always reason for hope.”
Hope, and good medicine, is what helps keep a smile on these youngsters faces. No easy task considering what they are going through. But Pendleton says kids actually make better patients than adults.
“I think its easier for me to work with them because they are pure, they didn’t cause it, whatever we do will be beneficial,” said Dr Pendleton.
“Children do not complain about things,” said Dr Pendleton. “They never lived through life and know what normal life is. To them this is normal life, they adjust, they adapt, they thrive.”
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“People ask me all the time how can you do this Doctor?” explains Pendleton. “How can you not do this? The patients, the children didn’t deserve anything they get. They go through life, not just the steps of life, eating breathing, going through the day. They live life, they play when they feel good they smile, they bring life to us, they bring a joy to us.”
Joy, and a cure. That’s what Dr Pendleton and everyone here want to bring to these families.
“Hope. All the reason to hope. No reason not to hope for a better future,” said Pendleton.
Despite the success rate and growing number of children with cancer, the national funding has been cut almost 30% in the past few years.
Update: Atlanta Braves Craig Kimbrel’s Cleats Sell For A Whopping Amount!
A pair of gold Nike cleats that were worn by Atlanta Braves closer Craig Kimbrel were sold on eBay to support the nonprofit Curing Kids Cancer organization. Many professional athletes stepped up this year in support of children with cancer and this was Craig’s effort to mark September as National Childhood Cancer Awareness Month.
Craig is the chairman of the charity’s program Players Curing Kids Cancer and the color gold happens to be the symbolic color of childhood cancer. All proceeds from the auction went to cutting-edge kids cancer research.
The Braves closer wore the gold-colored cleats on September 3, 2014 against the Philadelphia Phillies where he picked up his 42 save of the 2014 season and his 181th of his career.
“They raise money for research for pediatric cancer,” Kimbrel said. “September is the month and the color is gold to raise awareness. I decided to put those cleats together and wear them in a game and try to raise awareness.”
“We are going to try to auction the cleats off and try to raise a little bit of money for the charity.”
Well, they did raise some money…the auction ended Wednesday night with the total selling price at $2,275.00
A great cause from a class act guy…thank you Craig for supporting and doing all you can for children with cancer.
Chris’ Story
Written by Chris’ mom Amy:
Chris was born with hemihypertrophy. It is a condition in which one part of the body is larger than the other and is associated with an increased risk for certain cancers. In Chris case, his left leg is longer and bigger than his right leg. At 6 months of age he was sent to an orthopedist and geneticist. The orthopedist followed his leg length discrepancy and the geneticist evaluated him to rule out genetic syndromes and to screen him for Wilms Tumor. When we visited the orthopedist the first time at 6 months, we were sent for a screening ultrasound, this was the first time we heard of Wilms. I remember coming home and crying that day, knowing that my son was at risk for cancer. As time went on, Chris had AFP tumor markers drawn and screening abdominal and renal ultrasounds every 6 months. As he hit 7 years of age, we thought the risk for developing Wilms was behind us. His screenings were to end at age 8. So, at one of our last scans, I heard the words, “There is a growth”. I remember that day so vividly. I couldn’t believe what I was hearing! We were almost at the end of all of this. MY child couldn’t possibly have cancer…that happens to someone else, not us.
And then our world was changed forever. We entered the world of cancer….
What then followed was a whirlwind of emotions, tests, scans, and blood work. Meeting with oncologists and surgeons, going to the clinic, feeling scared, angry, depressed and sad. How did we get here???!!!!
After several scans and tests, there still wasn’t a clear diagnosis. His growth was outside the kidney, not inside as seen with typical Wilms. Also, Chris’s AFP level was extremely high, which is also not typical of Wilms. Our only option at this point was surgery to get a definitive diagnosis. His surgery was performed at Children’s National Medical Center on the first day of the start of his 2nd grade school year. The tumor was able to be removed, but took with it part of his kidney. Unfortunately, there was spillage of his tumor, which immediately moved him from a Stage II to a Stage III cancer. Two slow painful days of waiting revealed Extrarenal Wilms Tumor, a rare form of Wilms. He went back to surgery the next day for insertion of his port. Chemotherapy and radiation (because of spillage) were to begin the next week. But then Chris started having abdominal pain, vomiting bile, and abdominal swelling. He was rushed off to emergency surgery two days later for intestinal obstruction. So a 3-4 days stay at the hospital turned into a two week stay. Chris then had 7 days of radiation and 8 months of chemotherapy. Within that time frame, there were several ER visits and 2 hospital stays.
Of course our faith was shaken. How could it not be? I was so angry, sad, depressed, helpless and felt weak, when I knew I should be strong for my son. I felt like God had abandoned me. Why wasn’t he answering our prayers. How could he let this happen? I know I will never know the answer until He decides to reveal it to me. Through all of this, I have grown closer to God. I come to him in praise and thanks each and every day for what we do have, for being together in the present moment, for the nights I can still tuck my kids into bed and hug and kiss them. I never want to forget because it allows me thankful for today. I can’t forget because it has forever changed who we are. I look at my son today and see his strength and bravery and I feel truly blessed. Today I am happy to say that Chris is NED!!! We now live in 3 month increments…..one scan at a time!
Chris’ Crew on Facebook
Boston doctor in forefront of pediatric cancer research
Dr. Charles Roberts has a photograph of Mary Eisnor hanging in his office so he never forgets what he’s fighting for.
Mary, whose family lives in Bridgewater, died in 2010 at the age of 8 of hepatoblastoma, a form of liver cancer.
Roberts, an associate professor in the department of pediatrics at Harvard Medical School and in pediatric oncology at Dana-Farber Cancer Institute, attended Mary’s funeral.
“Every time we lose a patient to cancer it makes us want to go back and work that much harder,” Roberts said.
Roberts spends about 80 percent of his time running a research lab and 20 percent taking care of the kids who stand to benefit from that research.
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But we are only just beginning to understand how the human body works at the genetic level, Roberts said.
“It’s an incredibly complex choreography,” he said.
Roberts compared cancer to typos in a book – only the stakes are much higher.
“The mistakes that happen in genes are causing kids to die,” Roberts said.
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Roberts said childhood cancer research could absolutely benefit from more funding.
Pharmaceutical companies generally don’t focus on childhood cancer because there is not a large return on their investment, he said. That is due to the fact that – fortunately – childhood cancer is relatively rare, Roberts said.
Research companies also tend to be a little reticent to test drugs on children, so drugs tend to be tested on adults first, but the people developing treatment protocols for children are pediatric oncologists familiar with the unique needs of young patients, Roberts said.
Local family sets out to raise $8 million for pediatric cancer research
The Symmes family knows what it’s like to lose a child to cancer. So in honor of being Pediatric Cancer Awareness Month, the family is putting on several fundraisers to help reach their goal of $8 million.
The Pink Label Event is one of their most successful fundraisers. Local boutiques donated brand new items to be sold at a reduced price. Others donated gently used items as well.
All the money raised will go toward the Caroline Symmes Endowment for Pediatric Research.
Caroline died when she was 5. She had a passion for fashion and loved the color pink. Her mom Libby says she will still fight for other kids.
“When you’re told by your daughter’s doctor that she’s going to die because they can’t do any research. They have no resources then that strikes you and you have got to help other families because we lost Caroline to a disease that should have been treatable,” said Libby Symmes.
Cancer is one of the leading killers of children in America. More than 20 percent of pediatric cancer victims do not survive. Riley Hospital for Children agree that research could benefit these children. They’ve teamed up with the Symmes family to help with funding for a research center through federal funds.
“Riley and the researchers and clinical physicians are able to take those dollars and broaden that for national research grants take that money and make it much larger in this effort,” said Jason Mueller of the Riley Children’s Foundation.
The Symmes family says they can’t reach their goal without corporate sponsorships. But in the meantime they’ll keep raising funds through unique ideas like the Pink Label Event.
To learn more about the Caroline Symmes Endowment fund, click here.
Prayer Pillowcase Project
Find out how you can help out Alex’s Army’s Pillowcase Projects.
Details under How To Help > Prayer Pillowcase Project
Markell May Have Cancer. But He’s Unstoppable.
Markell is known as “Mr. Hollywood” – he is a 15 year old boy diagnosed with Osteosarcoma, with an unstoppable creative spirit and passion for life among all of his adversity. From the creators of My Last Days, Unstoppable is a four-part series in partnership with St. Jude Children’s Research Hospital in Memphis, Tennessee that profiles the strength and unstoppable spirit of their young patients.
‘Dream come true’: Tumor Paint BLZ-100 gets go-ahead for first U.S. trial
A new protein-linked dye derived from scorpion venom that lights up cancer cells so surgeons can precisely target brain tumors will get a trial run in the U.S., Blaze Bioscience Inc. officials announced Thursday.
Food and Drug Administration officials have approved an investigational new drug application, or IND, for Tumor Paint BLZ-100, a molecule discovered and first developed by researchers at Fred Hutchinson Cancer Research Center, Seattle Children’s Hospital and the University of Washington.
“I think it really is a dream come true – to be outdone only by seeing these cancers light up in patients,” said Dr. Jim Olson, a Fred Hutch pediatric brain cancer expert who pioneered the notion of targeting tumors with fluorescent dye to help surgeons distinguish healthy cells from malignancies.