how to help
ways you can help during childhood cancer awareness month BE A MONTHLY DONOR For the price of a monthly Netflix subscription, you can be a hero in the life of a child with cancer. Monthly gifts add up over time and make a lasting impact.
GET A HAIRCUT
YOUR GIFTS AT WORK, TRANSFORMING THE LIVES OF CHILDREN WITH CANCER BACK TO SCHOOL ISSUE — 2023
kidscancercare.ab.ca
ROCK YOUR DO A CAN DO CREATE YOUR LOCKS for KIDS LEGACY
If you’re looking Rock Your Locks for a place to get on September 23, those back-to2023. Join our school haircuts, community Big try Great Clips. Brave event Top up your bill and cut, colour, with a donation to or shave your Kids Cancer Care lid for a kid while and receive $5 off raising funds your next hair cut. for our essential programs.
What’s a Can Do for Kids? It’s a fundraiser organized by you or your company, your friends, or your family. It’s a great way to bring people together for a united cause.
Imagine a cure for cancer long after you’re gone. Creating your legacy is easy and there’s an option that’s right for everyone. Ask us for a copy of our Legacy Giving brochure today.
Donate, register or learn more at kidscancercare.ab.ca today.
research powered by you
Natasha and her family during a beach holiday
Cont. from page 3
By looking at the anti-DIPG cancer cell antibodies, which form in children who receive the vaccine, Dr. Narendran’s team is seeking to better understand its benefits, particularly a phenomenon known as neo-antigen spreading.
Kids Cancer Care Foundation of Alberta 5757 4 Street SE Calgary, Alberta T2H 1K8
kidscancercare.ab.ca
Kids Cancer Care Foundation of Alberta is a registered Canadian charity #89940 9171 RR0001.
“When we are infected by a bacterium or virus, the immune system initially recognizes only parts of that intruder, say, A, B, and C proteins,” explains Dr. Narendran “The immune system then stages a response to A, B, and C, but after a while, it spreads and can act on F, G, H, I, J, and K proteins. It’s like a ripple in a pond; it just keeps spreading outward.” Dr. Narendran has observed a similar response in cancer studies in the lab: “We noticed that the immune response following the vaccine increases gradually
and widely against the DIPG cells. This is an absolutely fascinating way by which the immune system carefully and effectively increases its offense against its target.” The goal of his research is to finetune the vaccine into a super-vaccine that is both safe and more and more effective in targeting and killing DIPG cancer. “I would love to see a cure for DIPG in my lifetime,” says Bill. “I would celebrate that, absolutely, that would be a joyous day. There would be a small part of me thinking, ‘Why couldn’t we have had it in time for Natasha?’ but I would be joyous just knowing that other parents and children won’t have to go through what we did. Thank you for supporting children’s cancer research.
REMEMBERING NATASHA AND HER QUEST FOR A CURE FOR CHILDREN WITH CANCER
research powered by you
CEO message
your support is moving researchers closer to a cure for DIPG
“ Little by little, a little becomes a lot.” — Tanzanian Proverb It’s Childhood Cancer Awareness Month and while it isn’t exactly a happy occasion, it is a time of action and solidarity for children. This month, I encourage you to do one thing for a child with cancer. Whether you become a monthly donor, make a one-time gift, or register for Rock Your Locks, your generosity will leave its mark on a young life. Natasha’s story in this issue demonstrates the power of one person. She was only 11 but she set the world ablaze with her passion for raising funds and awareness for pediatric cancer research. We see a similar passion in Dr. Narendran who is collaborating on a vaccine for DIPG, the brain cancer that took Natasha’s life. Natasha reminds us that it doesn’t matter how old you are or how big the gesture is, YOU can make a difference. With warmth and gratitude,
Christine McIver, M.S.M., LLD (Hon), CFRE Founder and Chief Executive Officer
Natasha Gould was 11 when she and her parents Bill and Saskia started having conversations about her passing. She was energetic, whip-smart, and a natural leader. Her life was far too brief but she found her purpose and lived it passionately.
The diagnosis The Gould family on a sailing adventure
It was March 2015 when Natasha started experiencing problems with her coordination and walking. She suddenly started tripping over her feet and falling. But when she bolted down the stairs one morning, asking, “Why didn’t anyone tell me my face was drooping?” her mother Saskia knew it was serious.
More funding for kids' cancer research
That morning, Natasha and her mother went to the hospital. Natasha was whisked away Natasha at home during her treatment “I have more to say. for an emergency MRI that same day. The MRI — Natasha revealed a brain tumour in her brain stem. It was diffuse intrinsic pontine glioma (DIPG), national headlines. The story spread like an inoperable brain cancer with an wildfire, resulting in a public apology average life expectancy of 11 months. by the Director of the Secret Service.
A star is born Shortly after diagnosis, Natasha started blogging. It wasn’t long before she amassed quite a following and caught the eye of Mike Gillette of The Truth 365 and CureFest — two American non-profits that raise awareness and advocate for children with cancer. After interviewing Natasha, Mike was so impressed, he invited her to Washington, D.C. to speak at CureFest in September 2015. Natasha was all in. The night before CureFest, some 250 people were planning to hold a candlelight vigil in Lafayette Park — across the street from the White House. When they were denied access, Natasha was upset. The next day, during her speech, she seized the moment and publicly aired her concerns. The little Canadian girl made
As the brain cancer increasingly limited her physical functioning, Natasha grew stronger in spirit and resolve. She blossomed into a formidable public speaker and activist, giving numerous media interviews in Canada and the U.S. She also gave a TEDx Talk and received a standing ovation. When she started speaking on that TEDx stage, Natasha came alive. She didn’t want to get off. “I have more to say,” Natasha said backstage. “I have more to say.” If she had lived to be an adult, Natasha would have likely pursued a career in the arts or in communications, or journalism.
Natasha understood the disparity in funding between adult and pediatric cancer research and she was passionate about righting that inequity — as are her parents today. “We have the technology, the wisdom, and the knowledge, and with God’s help, we can come together to collaborate to find a cure,” says Saskia. “But only five per cent of funding goes to childhood cancer research. When you look at the years lost for children, the aggregate of that just doesn’t make sense.” The cost of such disparity is the loss of young lives and unimaginable pain. The world lost a lot on August 4, 2016, when Natasha took her last breath, surrounded by her loving family and friends. “They’ve made advances in radiotherapy but the basic protocol for DIPG hasn’t changed for many, many decades,” says Bill. “In fact, Neil Armstrong’s daughter died of DIPG in 1962, before he went to the moon, and the protocol is still the same.”
Hope on the horizon
“She was forever writing a song, forever writing a story,” says Saskia. “This was a natural extension of who she was. She became an advocate for other kids fighting cancer.” Dr. Aru Narendran
With support from our generous community, Kids Cancer Care and countless parents like Bill and Saskia are working to change this. Thanks to your donations, a change in protocol for DIPG may be on the horizon.
Dr. Aru Narendran, a Kids Cancer Care-funded researcher at the University of Calgary and the Alberta Children’s Hospital, is collaborating with a group of American scientists on a vaccine for DIPG. Approved by the FDA for a phase one clinical trial in the U.S., three American children are participating in the trial. Once Health Canada gives its approval, eligible children at the Alberta Children’s Hospital will also be able to participate in the study. “The basic principle of vaccines is to restimulate or re-educate the immune system, so it can identify a foreign agent, be it a virus, bacteria or cancer cell, to initiate an immune response,” says Dr. Narendran. Cancer cells show up in the body frequently, but the immune system normally detects the cells as foreign and initiates an immune response to kill them. Dr. Narendran seeks to understand the fundamental biology behind why and how some cancer cells manage to trick the immune system and escape notice. “When a normal cell becomes cancerous, it expresses new proteins that are not found in healthy cells,” says Dr. Narendran. “These new proteins, called antigens or neo-antigens, set off warning bells in the immune system.” Developed by a group of American scientists, the DIPG vaccine was created to identify and attack a specific group of neo-antigens involved in DIPG. The goal of the trial is to determine the safety of the vaccine in children. Cont. on page 4
Photos courtesy of the Gould family
Unique Perspectives Photography
“If I die, really make sure, like make sure I’m not sleeping. If I go into a coffin to bury me, put a straw down just in case they made a mistake and I’m still alive. Or put a string down with a bell.” —Natasha
research powered by you
CEO message
your support is moving researchers closer to a cure for DIPG
“ Little by little, a little becomes a lot.” — Tanzanian Proverb It’s Childhood Cancer Awareness Month and while it isn’t exactly a happy occasion, it is a time of action and solidarity for children. This month, I encourage you to do one thing for a child with cancer. Whether you become a monthly donor, make a one-time gift, or register for Rock Your Locks, your generosity will leave its mark on a young life. Natasha’s story in this issue demonstrates the power of one person. She was only 11 but she set the world ablaze with her passion for raising funds and awareness for pediatric cancer research. We see a similar passion in Dr. Narendran who is collaborating on a vaccine for DIPG, the brain cancer that took Natasha’s life. Natasha reminds us that it doesn’t matter how old you are or how big the gesture is, YOU can make a difference. With warmth and gratitude,
Christine McIver, M.S.M., LLD (Hon), CFRE Founder and Chief Executive Officer
Natasha Gould was 11 when she and her parents Bill and Saskia started having conversations about her passing. She was energetic, whip-smart, and a natural leader. Her life was far too brief but she found her purpose and lived it passionately.
The diagnosis The Gould family on a sailing adventure
It was March 2015 when Natasha started experiencing problems with her coordination and walking. She suddenly started tripping over her feet and falling. But when she bolted down the stairs one morning, asking, “Why didn’t anyone tell me my face was drooping?” her mother Saskia knew it was serious.
More funding for kids' cancer research
That morning, Natasha and her mother went to the hospital. Natasha was whisked away Natasha at home during her treatment “I have more to say. for an emergency MRI that same day. The MRI — Natasha revealed a brain tumour in her brain stem. It was diffuse intrinsic pontine glioma (DIPG), national headlines. The story spread like an inoperable brain cancer with an wildfire, resulting in a public apology average life expectancy of 11 months. by the Director of the Secret Service.
A star is born Shortly after diagnosis, Natasha started blogging. It wasn’t long before she amassed quite a following and caught the eye of Mike Gillette of The Truth 365 and CureFest — two American non-profits that raise awareness and advocate for children with cancer. After interviewing Natasha, Mike was so impressed, he invited her to Washington, D.C. to speak at CureFest in September 2015. Natasha was all in. The night before CureFest, some 250 people were planning to hold a candlelight vigil in Lafayette Park — across the street from the White House. When they were denied access, Natasha was upset. The next day, during her speech, she seized the moment and publicly aired her concerns. The little Canadian girl made
As the brain cancer increasingly limited her physical functioning, Natasha grew stronger in spirit and resolve. She blossomed into a formidable public speaker and activist, giving numerous media interviews in Canada and the U.S. She also gave a TEDx Talk and received a standing ovation. When she started speaking on that TEDx stage, Natasha came alive. She didn’t want to get off. “I have more to say,” Natasha said backstage. “I have more to say.” If she had lived to be an adult, Natasha would have likely pursued a career in the arts or in communications, or journalism.
Natasha understood the disparity in funding between adult and pediatric cancer research and she was passionate about righting that inequity — as are her parents today. “We have the technology, the wisdom, and the knowledge, and with God’s help, we can come together to collaborate to find a cure,” says Saskia. “But only five per cent of funding goes to childhood cancer research. When you look at the years lost for children, the aggregate of that just doesn’t make sense.” The cost of such disparity is the loss of young lives and unimaginable pain. The world lost a lot on August 4, 2016, when Natasha took her last breath, surrounded by her loving family and friends. “They’ve made advances in radiotherapy but the basic protocol for DIPG hasn’t changed for many, many decades,” says Bill. “In fact, Neil Armstrong’s daughter died of DIPG in 1962, before he went to the moon, and the protocol is still the same.”
Hope on the horizon
“She was forever writing a song, forever writing a story,” says Saskia. “This was a natural extension of who she was. She became an advocate for other kids fighting cancer.” Dr. Aru Narendran
With support from our generous community, Kids Cancer Care and countless parents like Bill and Saskia are working to change this. Thanks to your donations, a change in protocol for DIPG may be on the horizon.
Dr. Aru Narendran, a Kids Cancer Care-funded researcher at the University of Calgary and the Alberta Children’s Hospital, is collaborating with a group of American scientists on a vaccine for DIPG. Approved by the FDA for a phase one clinical trial in the U.S., three American children are participating in the trial. Once Health Canada gives its approval, eligible children at the Alberta Children’s Hospital will also be able to participate in the study. “The basic principle of vaccines is to restimulate or re-educate the immune system, so it can identify a foreign agent, be it a virus, bacteria or cancer cell, to initiate an immune response,” says Dr. Narendran. Cancer cells show up in the body frequently, but the immune system normally detects the cells as foreign and initiates an immune response to kill them. Dr. Narendran seeks to understand the fundamental biology behind why and how some cancer cells manage to trick the immune system and escape notice. “When a normal cell becomes cancerous, it expresses new proteins that are not found in healthy cells,” says Dr. Narendran. “These new proteins, called antigens or neo-antigens, set off warning bells in the immune system.” Developed by a group of American scientists, the DIPG vaccine was created to identify and attack a specific group of neo-antigens involved in DIPG. The goal of the trial is to determine the safety of the vaccine in children. Cont. on page 4
Photos courtesy of the Gould family
Unique Perspectives Photography
“If I die, really make sure, like make sure I’m not sleeping. If I go into a coffin to bury me, put a straw down just in case they made a mistake and I’m still alive. Or put a string down with a bell.” —Natasha
how to help
ways you can help during childhood cancer awareness month BE A MONTHLY DONOR For the price of a monthly Netflix subscription, you can be a hero in the life of a child with cancer. Monthly gifts add up over time and make a lasting impact.
GET A HAIRCUT
YOUR GIFTS AT WORK, TRANSFORMING THE LIVES OF CHILDREN WITH CANCER BACK TO SCHOOL ISSUE — 2023
kidscancercare.ab.ca
ROCK YOUR DO A CAN DO CREATE YOUR LOCKS for KIDS LEGACY
If you’re looking Rock Your Locks for a place to get on September 23, those back-to2023. Join our school haircuts, community Big try Great Clips. Brave event Top up your bill and cut, colour, with a donation to or shave your Kids Cancer Care lid for a kid while and receive $5 off raising funds your next hair cut. for our essential programs.
What’s a Can Do for Kids? It’s a fundraiser organized by you or your company, your friends, or your family. It’s a great way to bring people together for a united cause.
Imagine a cure for cancer long after you’re gone. Creating your legacy is easy and there’s an option that’s right for everyone. Ask us for a copy of our Legacy Giving brochure today.
Donate, register or learn more at kidscancercare.ab.ca today.
research powered by you
Natasha and her family during a beach holiday
Cont. from page 3
By looking at the anti-DIPG cancer cell antibodies, which form in children who receive the vaccine, Dr. Narendran’s team is seeking to better understand its benefits, particularly a phenomenon known as neo-antigen spreading.
Kids Cancer Care Foundation of Alberta 5757 4 Street SE Calgary, Alberta T2H 1K8
kidscancercare.ab.ca
Kids Cancer Care Foundation of Alberta is a registered Canadian charity #89940 9171 RR0001.
“When we are infected by a bacterium or virus, the immune system initially recognizes only parts of that intruder, say, A, B, and C proteins,” explains Dr. Narendran “The immune system then stages a response to A, B, and C, but after a while, it spreads and can act on F, G, H, I, J, and K proteins. It’s like a ripple in a pond; it just keeps spreading outward.” Dr. Narendran has observed a similar response in cancer studies in the lab: “We noticed that the immune response following the vaccine increases gradually
and widely against the DIPG cells. This is an absolutely fascinating way by which the immune system carefully and effectively increases its offense against its target.” The goal of his research is to finetune the vaccine into a super-vaccine that is both safe and more and more effective in targeting and killing DIPG cancer. “I would love to see a cure for DIPG in my lifetime,” says Bill. “I would celebrate that, absolutely, that would be a joyous day. There would be a small part of me thinking, ‘Why couldn’t we have had it in time for Natasha?’ but I would be joyous just knowing that other parents and children won’t have to go through what we did. Thank you for supporting children’s cancer research.
REMEMBERING NATASHA AND HER QUEST FOR A CURE FOR CHILDREN WITH CANCER