“It has been amazing to be recognized nationally for this research but more important, is knowing that the research may actually have potential in the real world.” ~ Colette Benko

Colette Benko isn’t your average 15-year-old. Not because she’s already conquered cancer once, but because of her scientific mind and insatiable curiosity. If Colette has it her way, she’ll be conquering cancer the rest of her life, but this time, it will be from the inside of a research lab.

Thanks to you, Colette was able to start feeding her curiosity while working as a summer research student in Dr. Aru Narendran’s laboratory at the University of Calgary. But this wasn’t the first time Colette had been in a research lab.

For the past two years, Colette has been enjoying a rewarding and successful mentorship with Dr. Narendran, a pediatric oncologist at the Alberta Children’s Hospital and an Experimental and Applied Therapeutics (ExpAT) researcher in the Childhood Cancer Research Program at the University of Calgary.

Colette first met Dr. Narendran at the Alberta Children’s Hospital when she was being treated for synovial sarcoma, a cancer of the joints and soft tissue.

“I’ve always been a science nerd, but I had never done a medical science research project,” says Colette. “When Dr. Narendran found out that I love science so much, he agreed to mentor me. He’s been a great mentor. He’s so kind and patient and he’s so committed.”

“When Colette talked to me about wanting to do research in our laboratory I was impressed by her extraordinary self-assurance, energy and keenness,” says Dr. Narendran. “She reminded me of that Ivern Ball quote, ‘Knowledge is power, but enthusiasm pulls the switch.’”

The outcome of that enthusiasm has been two award-winning research projects for Colette.

Last spring, she won a silver medal for excellence in the 2016 Canada-Wide Youth Science Fair and a $2,000 scholarship for her research into a potential new therapy for neuroblastoma, a cancer of the sympathetic nervous system often found in infants and young children. In 2014, her research into an extremely rare and aggressive brain cancer in infants called ATRT won gold in the Calgary Youth Science Fair.

“It’s so incredible to work in a lab,” she says. “To actually experience and see results, not just read about it, is so satisfying.”

Colette is especially excited about the results of the neuroblastoma research, because it may actually have practical application in the world of pediatric cancer one day.

“It has been amazing to be recognized nationally for this research, but more important, is knowing that the research may actually have potential in the real world,” Colette says.

Working with students in Dr. Narendran’s lab, Colette was studying a unique new drug against three types of neuroblastoma and found that it inhibited growth in all three by stopping the action of a protein called EZH2, which is involved in blocking tumour suppressor genes.

“Normally, our cells rely on a group of molecules called tumour suppressor genes, which constantly act to prevent malignant changes in cells, by causing them to self-destruct,” she says. “But some tumour cells overproduce a protein that actually turns off tumour suppressor molecules, so the cancer cells continue to grow. The drugs we’re studying, known as the EZH2 inhibitors, aim to block this abnormal mechanism in neuroblastoma cells.”

When Colette presented her findings at the 2016 Canada-Wide Youth Science Fair, researchers investigating similar ideas were excited to see her data, as this drug has also shown effectiveness against pediatric brain tumours.

Still in the early stages, Colette’s findings seem to suggest that the drug may not only be inhibiting cancer growth; they may actually be inducing cellular death in the neuroblastoma cells. Another promising attribute of the drug is it doesn’t seem to attack regular cells, which could mean fewer side-effects for patients.

Working as a summer research student in Dr. Narendran’s lab this year, Colette was able learn more about the necessary processes involved in conducting cancer research, while also developing her understanding of the biology of various pediatric cancers.

Colette also continued generating data on her neuroblastoma project, testing whether the drugs are actually capable of inducing death in neuroblastoma cells and assessing what effect, if any, they may have on non-cancerous cells.

After graduating from high school, Colette plans to take her quest for a cure even further. She plans to pursue a Bachelor of Health Sciences at the University of Calgary and follow that with post-graduate work in pediatric cancer research.

Thank you for making our summer student research program possible. While providing scientists with much-needed help in the lab, the program helps ensure that promising young research talent is nurtured for tomorrow.

On September 15, 2016, the Pediatric Oncology Experimental Therapeutics Investigators Consortium (POETIC) and CorMedix Inc., announced a powerful new partnership in the fight against childhood cancer. With the new partnership agreement, POETIC and CorMedix will work together to develop a promising drug called CRMD-005 as a potential treatment for rare children’s tumours, including neuroblastoma and osteosarcoma.

CRMD-005 is a proprietary form of Taurolidine, an anti-microbial currently used to prevent infections in catheters. A safe product that causes very few side-effects, Taurolidine is also being studied as a treatment for cancer.

The new research effort will begin with pre-clinical studies to demonstrating its role in immunotherapy on pediatric cancer models in the laboratory. Laboratory studies show that Taurolidine is capable of inhibiting the growth of cancer cells at concentrations of 100 times lower that that which is needed for the drug’s antibiotic activity, suggesting the drug’s high tolerability (the degree to which overt adverse effects of a drug can be tolerated by a patient).

Working with POETIC physicians and scientists, Dr. Aru Narendran will lead the pre-clinical efforts, which will involve further defining Taurolidine’s potential role in treating pediatric cancers, especially in relapsed and drug-resistant cancers. It will also involve identifying the best drugs to combine with Taurolidine to plan for and test in future clinical trials.

“Our goals are to better elucidate Taurolidine’s mechanism effects and leverage its history of safety to maximize its anti-neoplastic potential in an intelligent and efficient manner,” said Dr. Narendran, a Kids Cancer Care-funded researcher in the Experimental and Applied Therapeutics Research effort at the Children’s Cancer Research Program at the Alberta Children’s Hospital and University of Calgary.

The program will involve collaboration with several National Cancer Institute centers that are part of the POETIC group, including Memorial Sloan Kettering Cancer Center (MSK), Weill Cornell Medical Center, Alberta Children’s Hospital, and other top tier cancer centers of excellence.

To read more about this research effort, visit CorMedix Inc.

POETIC is a network of pediatric oncologists and researchers from 10 top-tier academic medical research centers, who are collaborating across institutions to bring promising new therapies into phase one and phase two clinical trials for children with cancer.

CorMedix is a bio-pharmaceutical company that develops and brings to market therapeutic agents to prevent and treat infectious and inflammatory disease.

POETIC recognizes Kids Cancer Care with Partner of Distinction Award

POETIC recently recognized Kids Cancer Care’s contribution to childhood cancer research with a prestigious POETIC Partner of Distinction Award. The award recognizes our ongoing support of Dr. Aru Narendran and his research team at the Alberta Children’s Hospital Research Institute and the University of Calgary. Dr. Narendran is an Experimental and Applied Therapeutics researcher at the Childhood Cancer Research Program. The only Canadian member of POETIC, Dr. Narendran is currently the lead investigator in three phase one POETIC clinical trials.

“When Erik relapsed three years ago with AML, a bone marrow transplant was his only hope for survival. Brent was a perfect match and the stem cells they extracted from his bone marrow saved Erik’s life. We are so filled with gratitude for Brent and his kind, generous heart. We are thrilled to finally find him; it’s like our families have been matched now.” ~ Carol Gracia

Although Paul and Carol have never met Brent Lewelling before, the young man from Beaumont, Texas saved their son Erik’s life in 2012 when he was battling acute myeloid leukemia (AML), a high-risk cancer of the blood not often found in children.

“It was critical that we find a donor,” says Erik’s father Paul Gracia. “If we hadn’t found the perfect match, Erik wouldn’t have survived.”

A 20-year-old college student at the time, Brent was Erik’s perfect match. He underwent surgery to have stem cells harvested from his bone marrow to donate to Erik.

“They told me there was a little boy who needed my stem cells and asked me if I was still interested in donating,” said the now 23-year-old Lewelling, who is a father himself today. “I immediately felt this pull and felt like I needed and wanted to do this, so of course, I said, ‘Yes! When do you need me?’”

Originally diagnosed with AML when he was two years old, Erik underwent months of intense chemotherapy before going into remission. He enjoyed two cancer-free years and just as the Gracias were beginning to feel that he was out of harm’s way, he relapsed. This time, his only hope for survival was a stem cell transplant, which Brent made possible.

The bone marrow transplant was a life-saving, game-changer for Erik, who has been healthy ever since.

“When the agency called to say the boy’s family wanted to make contact, they said it may take over six months to actually hear from them; the Gracias called two days later,” Brent laughs. “It was so great to get that call. My mother has never stopped asking if I’d heard from that little boy and his family. It is such a blessing and joy to know that Erik is so strong and healthy today. Mom says I’ve always had such a strong immune system, because I never get sick; now Erik has my immunity too.”

Apparently, Brent Lewelling was an ideal donor. Studies show that donations from healthy young men like Brent, between the ages of 17 and 35, lead to improved overall survival in patients and lower rates of graft versus host disease (GvHD) for patients, so they are more likely to be chosen to donate by transplant physicians. GvHD is a condition where donor-derived blood cells see the patient’s body as foreign and so triggers an immune response, leading to serious complications.

Erik was fortunate to experience no complications or rejection issues after the transplant and, today, he is a healthy, active nine-year-old boy who loves sports. He and Brent experienced an instant bond and, during the five-day visit last July, the Gracia and Lewelling families enjoyed site-seeing tours around the province, including a trip to Banff and a backstage tour of the Grandstand Show at the Calgary Stampede. Erik was glued to Brent’s side during the entire visit. He calls Brent Superman Bone Marrow.

“Brent has shown me how to make a difference in the lives of others,” says Erik. “He’s also shown me how to give love to others who need it. Brent is part of our family now.”

“It is wonderful to see Erik and his family bonding with Brent and his family,” says Dr. Faisal Khan, an associate professor in the departments of pediatrics, and pathology and laboratory medicine at the University of Calgary’s Cumming School of Medicine investigating donor matching systems to improve outcomes for patients. “But the foundation of this bonding was actually laid in 2012, when Erik welcomed Brent’s stem cells into his body and Brent’s stem cells helped Erik to get rid of the unwanted cancer cells. This strong bond between the two of them, that we in the outside world are seeing today, has in fact, existed inside Erik’s body for the past three years. This fact itself speaks to the importance of donor matching.”

“Reunions like this are rare and they inspire us to continue to build a stem cell registry that reflects the needs of patients in Canada and all over the world,” says Dr. Dana Devine, chief medical and scientific officer, Canadian Blood Services. “This reunion is a testament to the collaborative relationships that exist with our international partners and with our Canadian transplant and research communities to ultimately improve patient outcomes.”

To that end, Canadian Blood Services focuses on recruiting young men between the ages of 17 and 35 to their adult stem cell registry and expectant mothers through the Canadian Blood Services’ Cord Blood Bank.

To register with Canadian Blood Services’ One Match Stem Cell and Marrow Network visit blood.ca. Registrants must be in good health and be 17 to 35 years old. They must be willing to donate to any patient in need anywhere in the world and have Canadian health care coverage.

He may only be five, but Kiptyn Claypool already understands an important life principle. He understands the magic of giving.

Kiptyn was only three when he was diagnosed with Wilms’ tumour and the little wooden train set his parents gave him assumed a whole new meaning in his life.

“He played with his train set non-stop during his cancer treatments,” says Kiptyn’s mother Alicia Bjarnason. “I think it helped focus his attention and give him a sense of order and control at a really scary time.”

When Kiptyn decided he’d outgrown his train set, Alicia knew it was a turning point in her son’s life. What she didn’t know is that he had resolved to give it away—and not to just any child. It had to be a child with cancer.

“I want another kid with cancer to have my trains, so they can help him like they helped me when I had cancer,” he told his mother.

It took Mary Phillipo, Kids Cancer Care’s family liaison, about a minute to find the ideal beneficiary of Kiptyn’s generosity—little Colby Kucharuk.

Diagnosed at 20 months with high-risk acute lymphoblastic leukemia, three-year-old Colby also knows cancer firsthand. And, like Kiptyn, he loves trains.

Mary arranged to have the two boys meet at Kids Cancer Care. It was a match made in heaven. The two boys became instant friends, playing with the trains they both love.

“I want another kid with cancer to have my trains, so they can help him like they helped me when I had cancer.” ~ Kiptyn

Photo gallery

We’d like to introduce you to the lovely Andrea. She’s making a difference in the lives of children affected by cancer by shaving her lid for a kid, not once, but twice! Read on to find out why Andrea’s hooked on Kids Cancer Care!

Roses are red
Violets are blue
I’m shaving my head
and I’m asking for donations from YOU! 

If my poetic talent is not enough to entice you to donate to my shave, then keep reading!

My name is Andrea, I am 21 years old and I love dogs (not relevant, but it’s an important thing about me).

On June 15, 2015 I will be shaving off all of my hair in support of the Kids Cancer Care Foundation.

In 2007, I participated in Shave Your Lid for a Kid to raise money for children and families affected by childhood cancer. The first time I did the shave, I did not know very much about the Kids Cancer Care Foundation, but after shaving my head in June of that year, my mom and I were invited out to visit Camp Kindle. I was hooked. Since 2007, I have volunteered as a camp counsellor at Camp Kindle (KCC’s amazing camp) numerous times, as well as I have volunteered at events in Calgary. I am continuously amazed by everyone who is apart of the organization.

I have worked hands on with some of the most amazing children I’ve ever met and their incredible families. I wish I had the words to explain how truly magical Camp Kindle is and how inspiring the campers are. I hope you will take my word for it though, and that you will help me to send more kids to camp. The money that I raise from shaving my head will go towards sending kids to camp as well as cancer research. I have seen first hand the positive impact that going to camp can have, and I want desperately to do what I can to make that possible for as many children as I can. While volunteering at Camp Kindle I have had the privilege of meeting many of the nurses who work in paediatric oncology as well as Kids Cancer Care’s program staff and they all work so hard to help keep these children’s spirits lifted. I want to do whatever I can to support that.

Please help me in whatever way that you are able to support the most amazing organization that I can think of. Any amount that you are able to donate is immensely appreciated. I am aiming to beat the amount that I raised in 2007 which was $5100! I am also planning some fundraisers over the next few months, so stay posted for information about those!

Thank you in advance for your support. To donate, please visit my shave profile.

Andrea

“Here in the heart of me, that’s where you’ll always be.” I am told that one of the greatest fears of families who lose a child to cancer is that their child will be forgotten. More than anything, they want to keep their child alive, if not in body, then at very least, in their hearts and in the hearts of others.

On the evening of September 30th, some 20 families affected by childhood cancer gathered at Eau Claire Market to do just that: honour the lives and memories of children taken by cancer. Not losing sight of the family nature of Kids Cancer Care, Time To Remember was suitably child-friendly with hot chocolate to warm our spirits as kids and parents of all ages crafted lanterns in honour of their lost loved ones.

Each family, each individual, brings their own special meaning to Time to Remember. I brought the only thing I could, a sincere desire to show solidarity with these families. In talking with families, I discovered that the experience of Time to Remember does not begin at 7 pm when they arrive at Eau Claire; it starts in the morning as they begin rummaging through old photos to choose just the right one for their lantern, each photo stirring new memories.

Time to Remember is a ritual, a rite, that begins early in the day and goes deep into the night. It brings families from all walks of life together to witness and share in their common loss. The symbolism of the warm light of the lanterns cutting through the darkness was not lost on the group meandering through Prince’s Island Park. The procession of families arrived at its destination, the amphitheatre of Market Square, where each family placed their child’s lantern. Gathered around the soft glow of these tiny lanterns, the group shared in a singing of Daniel Lavoie’s, Here in the heart of me. And with those words echoing through the night, Childhood Cancer Awareness Month came to a close.

Time to Remember is a fitting close to Childhood Cancer Awareness Month, an international initiative designed to illuminate the tragedy of childhood cancer and its devastating wake. With an overall survival rate of 82% for Canadian children with cancer, it is easy to lose sight of the work that remains. And yet, despite huge advances in research and care, childhood cancer is still the number one disease killing children today. So what of the children who do not make it? What of the families who lose these children? While remembering there children, Time to Remember reminds us of the work to be done — a cure for every child. You can easily fall into despondency when considering such tragedy, but hearing the families’ stories and how they have come through somehow offers you a healthy perspective on how best to support them–even if it’s as simple as just showing up.

I find it difficult to summarize the diverse experiences of these families into one message, but if I had to choose, it would be to always react to life positively and in such a way that honours its fragility and impermanence.

–Blair, childhood cancer survivor and volunteer

PS. You can get a sense of the evening from this photo collage of Time to Remember 2013, created by Monique de St. Croix of Unique Perspectives. We’re working on our photo collage for the 2014 event, so be sure to check back here or on our YouTube channel.

My name is Khadija Samoylove and I have just started a practicum for the fall semester working with teens at Kids Cancer Care. I am currently in my final year at the University of Calgary in the kinesiology program, and I am specializing in exercise and health physiology.

For my first project, I was asked to provide a small report outlining my current understanding of childhood cancer and Kids Cancer Care. I hope to look at this after my practicum and see where I stand then compared to what I know right now.

Cancer has always been a disease that scares me. Through all the research done, we are still not 100 per cent confident that it can be conquered. It is even more frightening thinking about having to deal with cancer as a child. When I think of childhood, I think of drinking juice boxes with friends on the playground and running around to play tag, not awaiting treatment in the hospital.

Through school, I was aware that leukemia was the most common type of childhood cancer, but I was unaware of the fact that lymphomas and brain tumors are also very common, as well as solid tumours. It is however, somewhat hopeful to know that children do respond better to treatment and are often able to survive cancer and go on to live fulfilling lives.

I have always been familiar with the general treatment types: chemotherapy, radiation and surgery. However, I was unaware of how drastic and hard some treatment types are, specifically bone marrow transplants. It is extremely hard to imagine having to undergo such treatment and being kept in isolation for such a long period of time.

Having a better understanding of childhood cancer and how it affects children and parents gives me a better idea of how important Kids Cancer Care is for these families. I was blown away by just how many programs and different aspects of support the foundation offers. It is my firm belief that children and teens of all ages and abilities should have some sort of support system, whether it is through their families or friends or other organizations. Kids Cancer Care is absolutely amazing at providing this. The fact that they have camps, activities, leadership programs, fun nights and simple acts of just giving back is making sure that kids and families affected by cancer have support in every way possible.

The importance of providing such support is immense. From my own experiences, leadership camps and having support throughout my childhood did wonders for my self-esteem and helped shape the person I am today. From that I can understand just how beneficial Kids Cancer Care is for kids who are dealing with much more than I could ever imagine.

I have already learned so much more about Kids Cancer Care and childhood cancer in the first week of being involved and I am looking forward to learning so much more! I am incredibly excited, and honestly a little nervous as I begin getting more deeply involved. I hope to provide the kids I am helping with as much knowledge and positive change as I know they are going to give me. Working over the rest of the semester with Kids Cancer Care is definitely going to be an amazing experience and one that I hope will help point me in the direction of a career path I would like to take in the future.

Most importantly, September is coincidentally Childhood Cancer Awareness Month! It is not too late to get involved and provide a little more joy into a child’s life. We know that the smallest things can make a huge impact, so anything and everything helps. Thank you!

Khadija Samoylove

It’s Childhood Cancer Awareness Month, so what does pediatric cancer really look like? The Huffington Post captures stories and portraits from several young patients.

In honour of Childhood Cancer Awareness Month, a generous donor has agreed to match ANY and ALL donations made in the month of September. We encourage you to go online and donate today. Double your gift, double your impact.

Thank you for caring about children with cancer.