Register: 3rd Annual Canadian Retinoblastoma Research Symposium

The third annual Canadian Retinoblastoma Research Advisory Board Meeting will be held in Toronto January 26 & 27, 2019.

The purpose of this free meeting is to bring together retinoblastoma survivors, family and friends of those diagnosed with retinoblastoma, health professionals, researchers, and policy makers to discuss retinoblastoma research.

To learn more and/or register for the meeting, click here.


My Experience Interacting with Kenyan Policy Makers and Cancer NGO’s

Author: Hodan Mohamud

My name is Hodan and this past summer in partnership with the University of Nairobi, I was fortunate enough to be a research student in the Dimaras Lab. As a research student I utilized published findings that investigated Kenyans’ experiences with retinoblastoma to develop knowledge translation plans for retinoblastoma genetics. My project’s foundation was focused on a seminal paper that was published in 2017 by Gedleh et al., in which crucial information regarding retinoblastoma genetics was highlighted. Crucial information that ultimately needed to be brought to the awareness of stakeholders such as the government, advocacy groups and health care professionals.

The Kenyan National Cancer Control Program (KNCCP) was one of the knowledge translation plan’s targeted stakeholders. The KNCCP develops a National Cancer Control Strategy every five years and was in the process of prioritizing recommendations for the current strategy. Leveraging an invitation to one of the KNCCP’s monthly meetings, I took the opportunity to present a policy brief centered on current knowledge regarding retinoblastoma genetics in Kenya. Developing and presenting the policy brief was a nerve-wracking experience. I needed to deliver a great presentation so members of the KNCCP would be aware of the crucial findings from the paper. Fortunately, the members of the National Cancer Control Program were extremely encouraging and receptive to my presentation. We had continued conversations about how the KNCCP may incorporate and implement the findings into their future strategies.

National Cancer Control Program
Me in front of the National Cancer Control Program’s Office in Nairobi, Kenya.

Aside from interacting with policy makers, I also met with Kenyan cancer NGO’s. I was fortunate enough to meet with members of the African Cancer Foundation, Kenya Cancer Association, and Hope for Cancer Kids. Kenyan cancer NGO’s work extremely hard to create awareness around the prevention, treatment and management of cancer, alongside supporting those affected by cancer. Many of these organizations hold events in the community to initiate dialogue around health and cancer. One of the more memorable events that I attended was a health and wellness event held on July 7th by the Africa Cancer Foundation called MoveEat. The event promoted messages on how to lead a healthier lifestyle to reduce the risks of cancer. It was super fun, had lots going on and included bouncy castles, Zumba, yoga, and bubble soccer for event participants. It was a great way to get the community actively involved in thinking about their health. Similar events are held regularly by Kenyan cancer NGO’s!

africa cancer foundation event
A picture from the MoveEat event held by ACF, I’m circled in the back.

This past summer I was able to witness the hard work required for Kenyan policy makers and cancer NGO’s to reduce the burden of cancer in Kenya. Presenting my policy brief to the KNCCP was a great learning experience to go alongside interacting with Kenyan cancer NGO’s. I hope conversations will continue to develop between researchers and policy makers so that crucial findings can make their way into policy that benefits all stakeholders.

ARVO Conference 2018

On July 18-21, 2018, the Ocular Oncogenesis and Oncology Conference was held in Lisbon, Portugal. Here we share the presentations that addressed retinoblastoma:

Dr. Brenda Gallie, Retinoblastoma can be a Zero Death Cancer

Dr. Jesse Berry, Aqueous humor as a surrogate tumor biopsy: The Future of personalized medicine for retinoblastoma

Dr. Junyang Zhao, Coordinating care across a large population: Management of retinoblastoma in China

Dr. Jasmine Francis, Current treatment of retinoblastoma ophthalmic artery chemotherapy

Dr. Arun Singh, Complications of current oncologic treatments

Laurence Desjardins, The future in management of ocular tumors: Multicenter initiatives 

Upcoming Retinoblastoma and Patient Engagement Meetings

The following is a schedule of upcoming retinoblastoma meetings for those who are interested. Links with more information are provided for each.

Retinoblastoma Meetings:

50th Annual Congress of the International Society of Paediatric Oncology
Location: Kyoto, Japan
Dates: November 16-19, 2018

3rd Annual Canadian Retinoblastoma Research Advisory Board Meeting
Location: Toronto, Canada
Dates: January 26-27, 2019

International Society of Ocular Oncology (ISOO) Biennial Conference
Location: Los Angeles, USA
Dates: March 22-26, 2019

Patient Engagement Meetings:

Foundations for Patient-Oriented Research (Edmonton)
Location: Edmonton, Canada
Dates: October 18-19, 2018

2018 Patient-Centered Outcomes Research Institute Annual Meeting
Location: Washington, USA
Dates: October 31-November 2, 2018

Strategy for Patient Oriented Research Summit 2018
Location: Ottawa, Canada
Dates: November 13-15, 2018

Patient-Oriented Research Training Program
Location: Online
Dates: Spring 2019

2018 Hellenic Heritage Outstanding Achievement Under 40

Dr. Helen Dimaras, (Scientist, The Hospital for Sick Children) founder of the Canadian Retinoblastoma Patient Engagement Strategy, was presented with the 2018 Hellenic Heritage Outstanding Achievement Under 40 award at the 22nd Annual Gala for the Hellenic Heritage Foundation on June 1, 2018. The award was in recognition of Dr. Dimaras’ research and humanitarian efforts to help children with retinoblastoma.

A short video was prepared to showcase this achievement. Watch the video to learn more about Dr. Dimaras’ work and hear from her colleagues about her accomplishments.

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