One Retinoblastoma World Registration is Open

One Retinoblastoma World (1RBW) is a conference that gathers together eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue best possible care for all affected children and survivors. 

This year the conference will be held virtually and occurs as two part-days on October 3 & 4, 2020.

Conference programming will cover a wide variety of retinoblastoma topics suggested by the retinoblastoma community. The conference will include a combination of presentations, panel discussions, and networking sessions. 

Each day of the conference will also feature a virtual child life activity, specifically developed for children with lived experience of retinoblastoma and designed to promote effective coping through play, education, and creative self-expression. 

Conference registration is now open!

Make sure to register before September 1, 2020 to receive a physical conference delegate package in the mail!

A Brief History of the One Retinoblastoma World Conference

Author: Kaitlyn Flegg

The One Retinoblastoma World Conference hosts eye and cancer specialists, researchers, parents and survivors from around the world to pursue the best possible care for all affected by retinoblastoma. Collaborative research, clinical care, and family support benefitting the majority of children and survivors can only be developed through these inclusive meetings with a real-world focus. 

Since 2012, this conference has continued to encourage collaboration and networking while focusing on understanding the needs of the patient and family. 

Previous in-person One Retinoblastoma World conferences have been coordinated in the same location as, and directly prior to, the World Congress of the International Society of Paediatric Oncology (SIOP). The SIOP Congress is the world’s largest annual paediatric oncology meeting, gathering thousands of medical professionals and parent/survivor advocates from every corner of the globe to share and build knowledge for children with cancer.  

One Retinoblastoma World meetings are hosted by institutions and organizations local to the country holding the SIOP meeting. The meetings often include a family day and a Child Life Programming. A tiered registration fee structure is offered with lower fees for survivors, families and those from low- and middle-income countries to enable inclusive participation and collaboration. 

Four One Retinoblastoma World Conferences have occurred to date: 

October 2-3, 2012: London, England, hosted by World Eye Cancer Hope UK

October 26-28, 2014: Toronto, Canada hosted by The Hospital for Sick Children, Retinoblastoma Program

October 17-18, 2015: Dublin, Ireland, hosted by the Retinoblastoma Programs of Ireland and The Hospital for Sick Children

A detailed summary of the 2016 One Retinoblastoma World Meeting is available here and here. 

October 9-11, 2017: Washington D.C., USA hosted by World Eye Cancer Hope USA 

A summary report from the 2017 One Retinoblastoma World Meeting is available here. Additional content, including videos of the panel sessions, is available here. 

Patient Story: Taline Dorna

Author: Ivana Ristevski

Taline Dorna has been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017 and along with her family she has participated in many different CRRAB activities. As a teacher, mom of 3, wife, and an aspiring author, Taline works around her schedule to participate in CRRAB activities in order to learn more about retinoblastoma, meet other families, keep up to date on research and to make a difference.

Taline’s journey started when her son was diagnosed with unilateral retinoblastoma at 5 months old.

For a couple of months, my husband and I had noticed that our son had an odd glow in his left eye. We mostly saw this glow when we took a picture of our son using the flash on our phone cameras. We dismissed it thinking it was likely the flash or bad lighting. After some time, we noticed the glow under dim lighting, depending on the angle the light was hitting his eye. This became concerning, and so we decided to take him to our pediatrician for a checkup. Our pediatrician had never seen anything like this before and was perplexed herself.

They saw an ophthalmologist and were immediately sent to SickKids where they received the diagnosis and treatment.

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Taline and her family started participating in CRRAB by attended their first symposium in 2018 where they participated in discussions to shape research projects and created dissemination materials to raise awareness of the Top 10 Retinoblastoma Research Priorities. The kids attended the Child Life program where they enjoyed doing medical play.
In 2020 Taline attended her second Retinoblastoma Research Symposium and participated in a research workshop to provide input on the design of the stickers to be used on the Retinoblastoma Journey Map, a project which will be tested for its use in providing a pathway of care for families of a child newly diagnosed with retinoblastoma.

As an educator, I was able to contribute my expertise and skills and apply it to something that will be an instrumental piece in the lives of other RB patients and survivors.

Participating in research can take many different forms and CRRAB helps to facilitate this by offering different ways to be involved such as:

• hosting the annual Retinoblastoma Research Symposium
• sharing opportunities to participate in research through the Retinoblastoma Research Registry by bringing forth vetted research studies
• offering platforms for engagement which include the monthly Regional Working Group calls and project specific patient partnerships

By being involved with CRRAB, I feel I’m able to gain a better understanding of the cancer my son had and what I can do to apply my skills to help raise awareness.”

“I’m currently in the midst of publishing my first children’s book that talks about a boy with RB that loses his ordinary eye and get’s an extraordinary eye! I wanted to do something to honour my sons name and help other children with RB feel good about themselves while raising awareness.

If you are interested in staying up to date on retinoblastoma research and events, sign up to the Retinoblastoma Research Registry.
If you are interested in participating in any of the CRRAB activities, send us an email at: retinoblastoma.research@sickkids.ca

Researcher Story: Why I’m Involved in CRRAB

Author: Dr. Sandra Staffieri, BAppSc(orth), PhD

I am an orthoptist by training, so my expertise lies in vision and eye problems, particularly in children. I have worked in the eye department at the largest paediatric hospital in Melbourne, the Royal Children’s Hospital, for 35 years. 26 years ago, I was asked to help coordinate the care of children diagnosed with retinoblastoma. Little did I know this would become a lifelong passion of mine.  As a Retinoblastoma Care Coordinator I have the privilege to walk alongside newly diagnosed families from diagnosis, through treatment to maintenance – and watch the children grow up and do amazing things – just like anybody else. I have been doing this for so long, I am now looking after the next generation – and that has been rather special.

All aspects of retinoblastoma are important. Genetic testing, the impact diagnosis and treatment has on emotional well-being on the whole family unit, survivorship, surveillance, and screening. That said, I have a particular interest in delayed diagnosis of retinoblastoma and raising awareness of the early signs of the disease. This brought me to completing my PhD in this area.

My research involved developing and evaluating an information pamphlet for parents to recognize the early signs of retinoblastoma – turned eyes (strabismus) and white pupils (leukocoria). Because of my background in children’s eye problems, I acknowledged that strabismus and leukocoria can mean lots of different problems – not just retinoblastoma. Armed with this understanding, I successfully advocated to our health department to include this information for parents as it was more than just the small number of children with retinoblastoma I was looking to diagnose early; it was all children with any eye problem that presented in the same way. Other diseases that present with these signs are often not as serious as retinoblastoma, but like retinoblastoma, early diagnosis means early treatment and better outcome.

I have been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017, but have known many of the Canadian retinoblastoma specialists for almost a decade.

I am very excited to be a member of the Research Development Working Group – Research Priority #1 “How to increase early diagnosis of retinoblastoma”. Due to my background in research, developing health information, childhood eye problems, and retinoblastoma; I am the research lead for a specific project that we hope will lead to earlier diagnosis. Together with other researchers, parents, and survivors interested in this topic we are trying to understand the process parents go through to achieve a retinoblastoma diagnosis in their child. When we identify the “barriers” (what caused delay) and the “enablers” (what worked well) for parents whose children have been diagnosed with retinoblastoma, only then can we see what worked and what didn’t – and then we can develop an action plan for improvement.

I look forward to completing this study and making a difference, where a difference can be made.

Developing a Patient-Reported Outcome Measure for Retinoblastoma

Author: Ana Janic, MSc

In 2018, I was welcomed onto a diverse, interdisciplinary team of dedicated retinoblastoma researchers. At that time, I was just starting my graduate studies and, I must admit, knew little about retinoblastoma and even less about patient engagement. However, my supervisor, Dr. Helen Dimaras, quickly offered extensive insight into the retinoblastoma universe. Almost overnight I found myself immersed in a huge community of retinoblastoma researchers, healthcare professionals, and patients who strongly engage in research.

Over the past two years, Dr. Dimaras and I worked together on an incredible project that is rooted in patient advocacy and encourages patient-focused evaluation of disease. Patient-reported outcome measures (PROMs) are questionnaires, completed by patients, that provide subjective information on various health concepts, like a patient’s quality of life, evaluation of symptoms, and physical, mental, or social well-being. Within a PROM, questions are grouped into categories, referred to as domains, which reflect aspects of the chosen health concept(s). PROMs are developed in multiple phases, with robust patient involvement, and take years to complete; my project represents the initial steps in the development of a PROM to measure retinoblastoma treatment outcomes.

The primary goal of my project was to uncover which treatment outcomes are important and relevant to retinoblastoma survivors and parents of survivors. To do this, I held focus groups with adult survivors and parents of survivors. Further, we decided to interview pediatric survivors between the ages of 6 and 17 years old. Figuring that survivors in this age range could complete a retinoblastoma-specific PROM by themselves, we felt it imperative to identify the valued treatment outcomes in this demographic in order to develop a comprehensive and relevant questionnaire.

Focus group discussions with pediatric participants was a new method for us, therefore, we consulted several scientific resources to ensure our methods were sound. One of our greatest feats was developing an easy-to-understand interview guide for child survivors. 

First, we started by mirroring the interview guide used in adult groups. The pediatric interview guide included the same question categories as the adult interview guide, however, question language was modified to adjust for comprehension. For instance, when discussing psychological and emotional outcomes, adult survivors and parents of survivors were asked:

“Does a good emotional state indicate successful treatment? What is a good emotional state?”

The question was modified for pediatric survivors to read:

“Some things make us happy, and other things make us uncomfortable and sad. Do you think that retinoblastoma, or retinoblastoma treatment, can make you happy or sad?”

After question modification, two pediatric interview guides emerged: one for child survivors aged 6 to 9, and another for adolescent survivors aged 10 to 17.

Still, even after the question language was modified, we recognized that some questions might be intimidating for survivors in the 6 to 9 age group to answer, possibly making them too shy or uncomfortable to answer. This forced us to get creative and think outside the box. After a lot of reading and brainstorming, we decided to incorporate role-play into the interview guide. Children were asked to play the role of a doctor treating a fictional retinoblastoma patient; in our case, Elli the Elephant. Elli, widely used as a retinoblastoma comfort toy, is a stuffed animal with one removable eye, developed by the German retinoblastoma patient advocacy group Kinder Augen Krebs Stiftung (KAKS, https://www.kinderaugenkrebsstiftung.de/en/homepage/elli/). Questions were modified to reference Elli and her treatment, in hopes to elicit the children’s own ideas and perspectives surrounding treatment outcomes. For example, when discussing the concept of independence and daily functioning, child survivors were asked:

“Elli is quite independent. She likes to read books, ride bicycles, and draw pictures, all on her own! What type of things do you like doing by yourself? Are there any activities you wish you could do on your own that you can’t yet? Is it important that you are able to do things on your own?”

With these modifications (and a box of 20 Timbits as a thank you to each participant), we successfully included young survivors in our research. This additional perspective led to incredibly meaningful findings which were not elicited through conversations with adults. I personally found the pediatric interviews very moving and engaging. In addition to being insightful beyond their years, the pediatric participants were wildly funny and smart. Every child and adolescent interviewed provided a rich description of their experiences living with and managing retinoblastoma. Survivors also clearly explained their personal understanding of what successful treatment means and identified important outcomes to include in a questionnaire.  Further, younger survivors gave a detailed account of how they would treat Elli; not only medically, to cure the tumor, but providing comfort throughout the process to help ease her nerves.

I would, however, be remiss not to acknowledge the research contribution of the adult survivors and parents of survivors. Their participation in the focus groups was extremely important in understanding the effects of retinoblastoma treatment over the course of time. It is their engagement and participation in research that drives retinoblastoma research in Canada and contributes to the success of the Canadian Retinoblastoma Research Advisory Board.

Having wrapped up the study now, I can say it was quite a success. We used the information gleaned from participants to identify potential health concepts and possible domains to assess in a future PROM. We are currently in the process of submitting this research for peer-review and publication, after which we will be able to confidently share the results with the broader public. Stay tuned for the release of our results and publication updates!

Conducting this research has taught me more than I can put into one blog post. There are many people who contributed to this work and I am beyond grateful for each and every one of them. However, this research ultimately could not have happened without the generosity and patience of the participants. To all the parents who spent their weekends with me, sharing difficult personal and family experiences; to all the survivors that participated, little and big, I have been profoundly moved by, and am deeply grateful for your kindness in sharing a piece of your life with me and allowing me the opportunity to learn about your world. You made this project real, thank you.

CRRAB and CRBS: How They Operate Uniquely to Serve…

By Ivana Ristevski and Genevieve Savoie

We are both personally touched by retinoblastoma and from our experiences we have found our spot in the retinoblastoma community where we want to make a difference. Together, we would like to re-introduce you to the Canadian Retinoblastoma Society (CRBS) and highlight its relationship with the Canadian Retinoblastoma Research Advisory Board (CRRAB). A passion for making a difference allows these organizations to work together so that we can positively impact all Canadians affected by retinoblastoma.
The chart below outlines the main attributes of each organization:

In 2019 and 2020, we collaborated to bring you the Retinoblastoma Family Gathering, which was part of the annual Retinoblastoma Research Symposium. Currently, we are working together to help organize the 2020 One Retinoblastoma World Conference which will be hosted virtually! See the blog post about information on the meeting here.
Our organizations’ unique qualities and strengths will be used support each other and work collaboratively. We will continue to work together by:

• Sharing ideas and opportunities with each other and with our members and social media platforms
• Participating in each other’s activities
• CRRAB will promote CRBS activities and provide research support and materials
• CRBS will promote CRRAB research initiatives to its members and provide patient connections

We are excited to keep working together and engaging the retinoblastoma community! Visit our respective websites for more information and let us know how you would like to be involved!

______	To join CRBS or for more information on the programs and supports available, please contact us:	For more information about CRRAB and activities, as well as the link to the RB Registry where you can sign up to receive opportunities to participate in research and receive research news, please contact us:
	www.rbsociety.ca	www.rbcanadaresearch.com
	cdnrbsociety@gmail.com	retinoblastoma.research@sickkids.ca

Opportunities to be Involved

Please see below a list of current opportunities to get involved with the Canadian Retinoblastoma Research Advisory Board. These opportunities are available to survivors, parents/guardians, siblings, healthcare professionals and researchers.

Social Media Team

Join our existing group of volunteers and help us develop new content for our social media platforms!

French Speaking Membership

Throughout 2020 the Canadian Retinoblastoma Research Advisory Board aims to better engage with the French-speaking community. Please help us recruit these individuals by translating current CRRAB content and creating new material in French

Regional Working Groups

The CRRAB regional working groups aim to engage with the broader retinoblastoma community in order to recruit patients for registry as well as health professionals, researchers and patients for CRRAB.

• West Coast Working Group meet on the 2nd Saturday of each month at 12:00 PM EDT 
• Central/East Coast Working Group meet on the 2nd Wednesday of each month at 12:00 PM EDT 

For further information on these opportunities please email retinoblastoma.research@sickkids.ca.

Feedback Requested

Feedback is requested from the general CRRAB membership on a future event, the One Retinoblastoma World Conference; and a current project, the Retinoblastoma Journey Maps. Please take some time to read about these endeavours and answer short surveys.

One Retinoblastoma World 2020 Conference

The One Retinoblastoma World Conference is held every two years and gathers eye and cancer specialists, researchers, parents and survivors from around the world  to pursue the best possible care for all children affected by retinoblastoma. Collaborative research, clinical care and family support benefitting the majority of children can only be developed through these inclusive meetings with a real-world focus. This conference is regularly scheduled ahead of the International Society of Paediatric Oncology (SIOP) congress which this year is being held in October in Ottawa, Canada. However, due to the uncertainty created by the COVID-19 pandemic the conference host, International Retinoblastoma Consortium and associated organizations World Eye Cancer Hope and local conference co-hosts, the Canadian Retinoblastoma Research Advisory Board, the International Retinoblastoma Consortium and the Canadian Retinoblastoma Society, have decided to hold the One Retinoblastoma World 2020 Conference virtually. This novel structure will allow for global collaboration and networking while prioritizing attendee health and safety. The virtual conference will consist of the same components as an in-person meeting (i.e., presentations, panel discussions and workshops), all hosted online. At this time we are requesting feedback from our community on potential dates and agenda items. Please click the link below to complete a quick survey to provide your response. Your feedback is greatly appreciated! 

https://forms.gle/7GYDbUtAQ6uZgZmaA

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Retinoblastoma Journey Maps

In order to address the Retinoblastoma Research Priority #9, a prototype of a patient-centered pathway of care has been developed which we call the Retinoblastoma Journey Map. Please refer to the newsletter article “2020 Retinoblastoma Research Symposium – Priority #9 Research Workshop – Creating a Prototype of the Retinoblastoma Journey Map” for more information.  

We are looking for your feedback on different aspects of the RB Journey Map. Please provide your feedback by clicking the link below where you will be directed to a questionnaire to complete. The questionnaire should take about 30 minutes. 

https://forms.gle/Hsak95Ha9kVDDEN6A

Family Story: Attending the Retinoblastoma Research Symposium

Author: Tricha Worobec

In January 2020 we had the honour of attending the Retinoblastoma Research Symposium in Toronto. This brought our family many learning opportunities, but most importantly provided us all with a deep sense of empowerment. 

The Canadian Retinoblastoma Research Board focuses on Patient Oriented Research. This allows patients to drive the priorities and outcomes for research. We gained knowledge of the fundamentals of Patient Oriented Research. Personally, since my expertise comes from being a parent of an RB survivor, the practice of speaking in a large auditorium with specialized doctors, researchers, ocularists, child life specialists, and geneticists would normally be intimidating. However, in this scenario, the focus is on inclusivity, co-learning, and mutual respect, so everyone who spoke, including myself, were equally valued; the entire experience was empowering. It was obvious that the primary focus of Patient Oriented Research is authentic partnership between patients and professionals. 

My partner and I were able to develop connections with other individuals affected with RB. While socializing with RB survivors from different age categories, they provided their own expertise from personal lived experiences that gave us insight to which we would have never known. We learned new techniques to help with the care of our son’s prosthetics as well as tricks to support him with depth perception and learning in school.  

In attendance with us at the symposium was our two children, our youngest Konnor who is our five-year-old RB survivor and our eldest Roman who is nine years old. Both of our children had the most incredible time learning, playing and engaging with the child life specialists and the amazing volunteers. Roman told us that he felt equally included in learning about RB and how people were equally interested in him as they were his RB survivor brother. Konnor was moved to tears when the event had come to an end, stating he didn’t want to leave the people who were just like him, who also had a “magic eye”. I was shocked to learn that Konnor had these big feelings of being different and made deep bonds with people who he said, “are just like me.”  It was not just resources that we gained at the symposium. We left with being empowered, connected, and most importantly with hope in knowing that the essential research being conducted is coming from our voices from within the RB community. We left knowing that each one of us can make a difference through research engagement.

2020 Retinoblastoma Research Symposium

The annual Retinoblastoma Research Symposium once again proved to be a resounding success! Held on January 25 and 26, 2020, the symposium gathered patients, survivors, family members, researchers, and clinicians to learn from each other, connect with their peers, and discuss the future of retinoblastoma research and advocacy.

Family Gathering

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The first event of the weekend was the Family Gathering which featured informative presentations from clinicians, researchers and patients. The first panel covered research and treatment updates, including information about new retinoblastoma research studies, a new treatment option and the work being conducted on updating the Canadian Retinoblastoma Guidelines. The next panel featured patient stories and allowed for engaging discussion between patients on their varied experiences and journeys. Following this, members of CRRAB spoke about patient involvement in research, highlighting the work completed and goals accomplished by the CRRAB working groups in 2019. The last panel of the morning was ‘Ask the Experts’ where healthcare professionals, representing physicians, nurses, ocularists, genetic counsellors social workers and an expert parent, were available to answer questions from attendees. Overall the panels of the Family Gathering succeeded in generating engaging discussion and sharing new information on retinoblastoma.

Following the general gathering, a Marketplace showcased the various services available to the retinoblastoma patient community. Concurrent to this was a new addition to the symposium agenda for 2020, the Adolescent and Young Adult Q&A and Networking session. This session, designed specifically for patients and survivors, allowed for confidential discussion of experiences related to popular topics including accommodations in post-secondary education and work force, family planning, and second cancer screening.

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Canadian Retinoblastoma Research Advisory Board Meeting

The afternoon consisted of the 4^th Annual Canadian Retinoblastoma Research Advisory Board (CRRAB) Meeting . The meeting reviewed our 2019 accomplishments and discussed new ideas to move CRRAB forward in 2020. With the goal to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes, a simplified governance structure was proposed. This new structure establishes: 

• project specific research patient partnerships when requested by researchers in order to help address a research priority 
• CRRAB tools to share information about research results and opportunities with the community 
• regional working groups to engage with the broader retinoblastoma community in order to recruit patients for registry as well as health professionals, researchers and patients for CRRAB 
  • Central/East Coast Working Group will meet on the 2nd Wednesday of each month at 12:00 PM EDT
  •  West Coast Working Group will meet on the 2nd Saturday of each month at 12:00 PM EDT

Through this structure CRRAB aims to meet new objectives in 2020. If you are interested in participating in one of the regional working groups, please contact: retinoblastoma.research@sickkids.ca for the ZOOM link information.

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Research Workshops

Following the Family Gathering and CRRAB meeting, Sunday’s symposium activities began with gentle morning yoga. Attendees were invited to be present and create space in mind and body ahead of the day’s research workshops.

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Priority #1 Research Workshop – Early Diagnosis

Author: Dr. Helen Dimaras

The 2020 Retinoblastoma Research Symposium saw a new Research Development working group come together, made up of patients, researchers and clinicians from Canada, Australia and the US. The group’s focus is on solving the #1 Retinoblastoma Research Priority in Canada: “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?”  The main objectives for the group over the course of one year will be to: decide on a research approach; identify additional team members for relevant expertise or specific tasks; identify relevant funding opportunities; design a research protocol; and complete a funding application. 

At the inaugural meeting, Working Group members participated in a brainstorming activity to break down the steps necessary for timely detection and diagnosis of retinoblastoma. They discussed various barriers that could impede timely detection and diagnosis at the public, family and medical level. The group decided to focus on 3 distinct research areas: 

1) Soliciting patient experiences to define real barriers and facilitators to early diagnosis; 

2) Examining technological approaches to leukocoria detection; and 

3) Improving medical competency in performing red reflex examinations. 

The Working Group will meet regularly online to refine the research approaches culminating in a final meeting at the 2020 One Retinoblastoma World Conference, where a research proposal and funding application will be finalized. 

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Priority #9 Research Workshop – Creating a Prototype of the Retinoblastoma Journey Map

Author: Ivana Ristevski

Retinoblastoma treatment is complex, and the treatment and follow-up plans for each patient may be different. Currently, there is no uniformity in how patient families receive information about their care; most families receive information through discussion with their healthcare providers, and some written, piecemeal information. One of the Top 10 Research Priorities raises this concern, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”.

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The Priority 9 Workshop was led by Parent in Research, Ivana Ristevski, and Child Life expert, Morgan Livingstone and included parents, survivors, clinicians, health professionals, and children. The main goal of the workshop was to develop a patient-centred pathway of care based on the ‘Get Well Maps’ concept, a form of child-centered medical communication.

Using the ‘Get Well Maps’, we talked about how families would use the map and which stickers we would need to create to accurately reflect the retinoblastoma journey. From this discussion we agreed upon the concept of the stickers and provided feedback to the illustrator to produce 10 prototypes. These prototypes capture special events in the retinoblastoma journey.

Ivana worked with the illustrator after the meeting to design the prototypes for the clinical stickers based on the feedback from the workshop. The illustrator then created designs which we would like to ask all CRRAB participants to provide some feedback on.

Please click on the link below to be directed to a questionnaire where you will be asked  to provide your feedback on several aspects of the RB Journey maps including sticker design, sticker description, and usability.  The questionnaire should take about 30 minutes to complete.

https://forms.gle/Hsak95Ha9kVDDEN6A

 Once we have your feedback, we will improve the RB Journey Maps prototype before it is  handed out to newly diagnosed families. The families will use the maps for six months and provide continuous feedback on their experience. The feedback provided will help us refine the package and create a proposal for scale-up and sustainability of the project at SickKids.

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Foundations of Patient-Oriented Research

Author: Francine Buchanan

There is nothing more invigorating than walking into a room of patients, families and researchers all keen to learn about how to partner together to make research better.  The group together was keen to learn about the history of patient engagement, why it should be done, and the values associated with doing it in an authentic manner.  But what filled me with such pride and joy was seeing the group working together to develop a list of their own best practices, ways that they want to and can partner together to make research better. Using their own experiences, from both partnership work already done and experiences from their own personal work, the group was able to build a list of practical tools, techniques and practices that they are able to bring to future engagement work.  Thank you all for attending the session and sharing your knowledge with others.

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Child Life Directed Children’s Program

Author: Morgan Livingstone

The Child Life Directed Children’s Program during the Symposium this year included a wide range of specialized activities and learning experiences meant to foster creativity, self-expression, fun, and bonding. With a wide range of activities offered over the two-day program, kids of all ages were busy!  

The medical play station had our favourite patient puppets, including puppet Kamau, Elli the Elephant and Dino the Dinosaur for us to examine and evaluate with our stethoscopes, otoscopes and medical equipment. This year we included a lab station with pipettes and vials to test samples under magnifying glasses and microscopes. Numerous prosthetic eyes were available for children to explore and handle using fingers or suction cups to foster greater comfort and skill in handling their own prosthetic eyes in their own self-care.

The most amazing addition to the medical play station this year was the co-created MRI machine that children and child life staff built out of “loose parts” using recycled boxes, pipe cleaners and a crawl tunnel. The creation of this MRI facilitated discussion about MRIs, what they are for, the noises they make, and strategies for staying still during an actual procedure. Children were able to practice laying still in our “MRI” while listening to simulated MRI sounds on the helpful app, Simply Sayin’.

Children were also able to read and enjoy the newest Child Life Prep book for children with Retinoblastoma and their families “My Prosthetic Eye: Visiting the Ocularist”, made by Certified Child Life Specialist Morgan Livingstone and Ocularist Child Life volunteer Rebecca Gallant.   We welcomed guest Matthew Milne, the local ocularist, for some fun creative arts activities. Matt helped each child make a special finger cast sculpture of their own fingers using the same plaster and alginate impression material he uses to make children’s prosthetic eyes! This allows the children to gain familiarity and confidence with the material, ask Matt questions about what he does when making a special eye, and build a friendship with Matt.

Another guest, Alexander Theodorou, from Neurofit, brought an awesome virtual reality game for each of the children to explore. This game was for all children, including those with monocular vision, and low vision. The games allowed the children to find and identify shapes and alphabet letters in mazes with settings, from easy to difficult, depending on age and stage of development.

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At our art station, the creative kids made so many individual and group art activities over the course of the program. From self-published books all about themselves, to group murals for the symposium, to personalized buttons, kids tried new materials and art mediums to express themselves in many creative ways. One of our BIGGEST projects, was a group board game! This huge board game included co-creating space, giving space to include positives and negatives about the children’s lives, family, friends, and treatment experiences. A positive space, such as, “I cleaned my room without being asked” resulted advancing a few spaces. A negative like “I talked back to my mom when I was angry” resulted in a missed turn or going back a few spaces. The group discussed and added tasks or actions for players to do if they land on certain spaces like sing a song or tell a joke. The game allowed children to think and talk about the negatives and positives they feel are important. 

Each child was able to make their own snow globe jars, marble painting, stress balls and slime! Our hands and our hearts were busy the whole time! Friendships were deepened and so much laughter shared too!

Huge thank you to our child life staff and volunteers: Alexx Friesen, Kim Zinc, Jocelyn Leworthy, Michelle Badajoy, Beth Nelson-Agne and Faiza Ali. This incredible program would not be possible without them!

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Overall the 2020 Retinoblastoma Research Symposium was well attended with numbers similar to that of the previous year.  However, we were lucky to see many new faces in attendance. One of these new families were the Worobecs. In describing her experience at the symposium Tricha, a parent of five-year-old retinoblastoma survivor writes, “It was not just resources that we attained at the symposium, we left with being empowered, connected, and most importantly hope in knowing that the essential research being conducted is coming from our voices from within the RB community. We left knowing that each one of us can make a difference through research engagement”. You can read more about the Worobecs’ experience in Tricha’s blog post.

Thank you to all who attended the symposium and shared your experience with the community. Thanks also to presenters, Child Life staff and volunteers who supported the event and allowed the 2020 Retinoblastoma Research Symposium to be a success.