Archive | Advocacy RSS for this section

Cancer survivor Marnie Geniole to raise world’s largest golden awareness ribbon at Ottawa City Hall on Jan-28 in preparation for International Childhood Cancer Awareness Day (Feb 15, 2020)

Together with the Royal Canadian Mounted Police, young Ottawa area cancer survivor Marnie Geniole (Miracle Marnie Foundation) will raise the world’s largest golden awareness ribbon 50 ft over Ottawa City Hall to promote the countdown to International Childhood Cancer Awareness Day.

International Childhood Cancer Day is February 15, 2020. #ICCD2020

Events will kick-off at 10:00 am in the Ottawa City Hall rotunda with speeches and performances by childhood cancer survivors to honour the annual 300,000 children diagnosed world-wide with one of 12 primary types of childhood cancer. Dr. Donna Johnston (Chief of Oncology, CHEO) and Jocelyn Lamont (Executive Director, Candlelighters Ottawa) will be event keynote speakers.

Raising of the international flag of child/adolescent cancer is scheduled for 10:45 am.

Background:  This 24th annual #ICCD event is a joint effort between Ottawa Candlelighters and members of Childhood Cancer International, a child cancer parents’ organization comprised of 167 member groups in 90 countries.

Scheduled Attendees:

  • event coordinator and Marnie’s Dad, Thomas Geniole (Miracle Marnie Foundation)
  • Dr. Donna Johnston (Chief of Oncology from Children’s Hospital of Eastern Ontario)
  • Naomi Thick, RN (SIOP nursing committee local chair)
  • Jocelyn Lamont (Director, Candlelighters Ottawa)
  • SIOP representatives
  • Members of local childhood/adolescent cancer care foundations including Miracle Marnie Foundation, Phoebe Rose Rocks Foundation, Kids Kicking Cancer and Candlelighters Ottawa supporters

Dr. Johnston is also Chair of the local organizing committee of this year’s International Society of Paediatric Oncology (SIOP) 52nd Annual World Congress, to be held at the Shaw Centre in Ottawa October 14-17.

Additional information:

BIG HAND, LITTLE HAND A Mum’s Story of Love, Hope and Loss | Book release by Australian Mum Trish Carpenter

The following book release information was shared to our Canadian parent advocates by Mary McGowan (Childhood Cancer International board of trustees) in preparation for International Childhood Cancer Day (February 15, 2020) which as always is recognized and endorsed by the WHO, SIOP and UICC.

Purchase information at

About the Book and Author

“The loss of a child is every parent’s nightmare, and one that Trish Carpenter has lived through. In this raw and real tale, Trish shares her son Thomas’ courageous fight with medulloblastoma, an aggressive childhood brain cancer. From the shocking diagnosis, to surgery and treatment, then came a new trial put before this young boy… During surgery to remove his tumour, Thomas acquired a brain injury known as Posterior Fossa Syndrome. This presented an additional challenge for a family already on its knees. Thomas was suddenly unable to sit, speak, swallow or control any voluntary muscle in his body. He was back to square one as a seven-year-old boy and in for a long journey of rehabilitation. Trish found that she was in need of answers beyond doctor advice, looking for helpful information and wanting to hear from other parents’ experiences. She didn’t find what she was looking for and she became frustrated and confused about how she could best help her son.

While never giving up hope, this little boy demonstrated courage, resilience and perseverance throughout his grueling 13-month battle with brain cancer. This is the story of a superhero. This is Thomas’ story. “

Trish grew up in the south of Brisbane, in Queensland, Australia. A high school teacher of music and history, she lives with her son Cameron, her husband Owen and Penny, their labradoodle. Trish is passionate about finding meaning in the journey she has been on with her son Thomas and hopes this story brings some comfort and resonance to other families caring for children with cancer.


What can you do to promote awareness of International Childhood Cancer Day (Feb 15)?

As February approaches please help spread awareness of the global impact of childhood cancer, as marked on February 15th by International Childhood Cancer Day (ICCD).

Post regularly to social media with graphics and topics that address childhood cancer.

“International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and the society as a whole. It also spotlights the need for more equitable and better access to treatment and care for all children with cancer, everywhere. “

For more information see

Did you know that children with cancer are 60% more likely than their classmates to be bullied? Click to see the public service announcement video by the Coalition Against Childhood Cancer.

Warning. This PSA contains strong emotional content. #ChildhoodCancer #FunnyCancer

Please watch this informative video on bullying.

The public service announcement video below was produced by the Coalition Against Childhood Cancer (CAC2)in response to the reality that children and adolescents with cancer and childhood cancer survivors experience an increased risk of bullying. We encourage you to not only watch, but also share this important message to help reduce bullying against childhood cancer patients, or any child.

Bullying in the Childhood and Adolescent Cancer Community

Some childhood and adolescent cancer patients and survivors may be at risk for bullying because they appear or act differently due to the effect of their disease or treatment. Children and adolescents who have or have had cancer are much more likely (more than 60%) to face bullying than their healthy classmates.

Bullying, according to the American Psychological Association (APA), is aggressive behavior where someone intentionally and repeatedly injures another person or causes them discomfort. It can be physical contact, but also manifests as taunting words or social exclusion. The person being bullied doesn’t cause the bullying and may be unable to defending him or herself.

The APA goes on to say that cyberbullying, bullying that happens through online interactions, is also a problem. Cyberbullying might include sending hurtful or threatening messages, spreading rumors, or posting embarrassing photos of others.

This Friday (February 15th) is International Childhood Cancer Day–see below for resources suitable for social media and printables

The following is from Vickie Buenger, President of the Coalition Against Childhood Cancer and is being shared with the membership of CAC2.

This Friday is International Childhood Cancer Day. To help your planning, I am forwarding the information and images that Jess and Neal (as Awareness and Advocacy leads) have pulled together to support a coordinated campaign around this opportunity and make it easier for CAC2 members to participate if they choose to. CAC2 members will receive the information contained below on Wednesday, and they will receive a second email early on Friday morning. If you already have your own plans, great. This is just to simplify the process a bit.

With appreciation — Vickie

Toolbox for International Childhood Cancer Day – celebrated worldwide on February 15


This year, ICCD is focusing on reducing cancer and treatment related pain. In 2011, a study found that 65.6% of countries worldwide offered no palliative care services for children. Help us fight for #NoMorePain.

What is ICCD? International Childhood Cancer Day is a global collaborative campaign to raise awareness and promote an increased appreciation and deeper understanding of the challenges faced by children and adolescents with cancer, the survivors and their families. ICCD spotlights the need for more equitable access to treatment and care for all children with cancer, everywhere.

DOWNLOAD: Please feel free to download the ICCD 2019 Toolkit HERE. You can find the artwork for the new ICCD logo, as well as custom posters, graphs and social media tools, specifically created for member organizations to use in the event planning process to raise awareness about the need to eliminate pain and suffering of children with cancer.

EDUCATE: The CCI Board of Trustees applaud the 2018 release of the WHO’s palliative care guide entitled, Integrating Palliative Care and Symptom Relief into Paediatrics: A WHO guide for healthcare planners, implementers and managers. CCI encourages all members to share this valuable document with those in your countries who provide the planning, implementing, managing or assuring access to quality of palliative care for children. Download HERE.

ADD FRAME TO SOCIAL MEDIA: Raise awareness about the need to reduce cancer and treatment related pain by participating in our #NoMorePain Campaign! Use our Facebook Frames found in the Toolkit to raise awareness of children and their families in your country. Please use the hashtag #NoMorePain as well as #ICCD2019 when posting on social media.

Improving Outcomes for Canadian Children, Adolescents, and Young Adults with Cancer: A proposal for a working relationship with Health Canada [Ac2orn]

Despite gains in childhood, adolescent and young adult (CAYA) cancer research and treatment, Canadian children continue to die. Advocacy for Canadian Childhood Oncology Research Network (Ac2orn) has a plan for a coordinated Canadian effort to ensure that survival rates continue to increase, that research capacity is strengthened, and that Canada continues to lead in CAYA oncology. Our plan is supported by 30 Oncologists and 31 different cancer organizations.

Here is the link to the proposal: caya_cancer_research-Canada_health_system_efficiencies-proposal_exec_summary-jun19_2018

Terry Fox is the First Recipient of the Order of the Oak

Terry Fox is the first person to be honoured with the Ac2orn Order of the Oak award recognizing excellence in childhood, adolescent and young adult cancer research and advocacy in Canada.

Advocacy for Canadian Childhood Oncology Research Network, Ac2orn, announced today that Terry Fox will receive the first Order of the Oak award recognizing excellence in childhood, adolescent and young adult cancer research and advocacy in Canada. The Order of the Oak is an award that will be given out yearly during the month of September in recognition of childhood cancer awareness month.

At Ac2orn, we believe that childhood cancer can lead to better treatment for all Canadians,” said Patrick Sullivan, a co-founder of Ac2orn. “We wanted the award to recognize someone who through advocacy or research exemplifies leadership and has made a significant contribution to advancing Canadian cancer research. When it comes to leadership and contribution we could think of no one more deserving of the inaugural Order of the Oak than Terry Fox.”

To read the entire release, click on Order of the Oak 2015.

To learn more about Ac2orn go to