Sharing CRRAB’s Message with OPACC

Author: Ivana Ristevski

I heard about Ontario Parents Advocating for Children with Cancer (OPACC) when we got our son’s retinoblastoma diagnosis and learned how they have programs that can help families with hospital parking and provide backyard playgrounds. Once we started seeing Oncology on the 8^th floor of SickKids I would often see the Parent Liaisons during our appointments. The Parent Liaisons always brought coffee to break the ice and help the parents get through the day.

However, OPACC is more than just that, they are a registered charity which supports families by being the leading voice and expert resource for families (including retinoblastoma) navigating childhood cancer. They support families through various programs such as the Parent Liaison program at SickKids and Credit Valley Hospital (currently offered virtually), community-based parent support groups, and advocacy efforts which enable parents to advocate for themselves as well as advocate on behalf of families on a provincial level.

One of the many programs OPACC offers is an online guest speaker series featuring different expert offering information to childhood cancer families. CRRAB was invited to be a guest speaker in May and share information about how patients partner in retinoblastoma research and I had the pleasure of presenting. You can watch the video of the presentation below and learn more about how retinoblastoma families and survivors have partnered in retinoblastoma research by sharing their lived experience and skills.

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2022 Virtual Retinoblastoma Research Symposium

The 2022 Retinoblastoma Research Symposium was once again a success! While the COVID-19 pandemic prevented us from meeting in person for the second year, we were able to gather virtually on January 15, 2022 to grow together and advance patient-oriented retinoblastoma research in Canada. The symposium gathered many stakeholder groups including retinoblastoma patients, survivors, parents and other family members, researchers, and health professionals to connect with each other, learn about CRRAB and discuss the future of retinoblastoma research. 

This year, the symposium was hosted on Gather, a web-conferencing software like Zoom, but with the added component of seeing the virtual “room” you and others are occupying, and with the ability to move an avatar and interact with other participants based on your locations in the room, just like real life. 

CRRAB Birthday Celebration 

Following initial mingling and a virtual icebreaker activity the first session of the symposium was a celebration! In December 2016 the Canadian Retinoblastoma Patient Engagement Strategy was launched, and the Canadian Retinoblastoma Research Community was created. CRRAB was then created to lead the strategy in order to share research results, include patients in research and promote research created by patients. This first session brought us through the history of CRRAB to celebrate its fifth year! 

Self-Guided Information Rooms 

The next session of the symposium allowed attendees to visit virtual rooms to asynchronously learn about various CRRAB tools, current research opportunities, and hear from our partners. 

Retinoblastoma Research Community Room 

Finding a diverse, representative group of retinoblastoma patients is at the cornerstone of having an effective national patient engagement strategy. To address this, we developed the Canadian Retinoblastoma Research Community. 

This information room spoke to the many benefits of joining the Retinoblastoma Research Community. A feature of the session was the changes made to Community registration in 2021 that now allows non-patients (i.e., health professionals, researchers and advocates) to join as well as the expansion to include individuals from all over the world. You can join the registry here or if you are unsure if you’ve already registered you can email retinoblastoma.research@sickkids.ca.  

CRRAB Website Room 

The purpose of the CRRAB website is to inform the public of upcoming CRRAB events and ongoing research recruit members to the Canadian Retinoblastoma Research Community. Over the past few years our website team has used an iterative process to add new sections and improve the site to meet the needs of our group. 

Serge Dorna, retinoblastoma parent and CRRAB member, highlighted the importance and usage of CRRAB’s website in a room dedicated to the topic. The room displayed the many improvements made to the website during 2021 including the plain language article summary page and the Retinoblastoma Research and You! Booklet page. Many suggestions for further website upgrades were also given. If you have any suggestions for our website or are interested in helping make improvements please contact retinoblastoma.research@sickkids.ca.  

CRRAB Social Media Room 

The purpose of CRRAB Social Media is to engage with a multidisciplinary group of stakeholders to increase participation in CRRAB and enrolment in the Canadian Retinoblastoma Research Community. Over the last few years CRRAB has assembled a small team of volunteers to continually develop content for our social media platforms (currently Twitter, Facebook, and Instagram). 

This information room outlined the history of CRRAB’s social media presence. Recent improvements were presented including increased post quantity, engagement of external organizations and the initiation of the Instagram takeover series. If you are interested in joining the CRRAB social media volunteer team, please contact retinoblastoma.research@sickkids.ca and please continue to share CRRAB posts to your social media accounts! 

Retinoblastoma Journey Maps Project Room 

The Retinoblastoma Journey Maps project was developed to address Retinoblastoma Research Priority #9, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Based on the “Get Well Maps” concept the Retinoblastoma Journey Map is a patient-centred pathway of care developed with the help of retinoblastoma survivors, parents, researchers, and health professionals. The Retinoblastoma Journey Map was tested with a small group of families over the course of six months via a quality improvement project at SickKids.  

This information room provided an update on the project, which is currently in the data analysis phase, and asks that CRRAB members attend the Project Workshop on Saturday, April 9 at 12PM ET to discuss and interpret the project’s results. Email retinoblastoma.research@sickkids.ca for more details on the project and the upcoming workshop. 

Canadian Retinoblastoma Research Society (CRBS) Room 

The Canadian Retinoblastoma Society is a registered charity run by a team of committed volunteers to provide education, advocacy and peer support to Canadians touched by Retinoblastoma. Genevieve Savoie, CRBS president, hosted an information room to supply background on the group and discuss upcoming CRBS community calls and other events. For more information on CRBS please visit rbsociety.ca.  

CRRAB Annual General Meeting 

The symposium then moved onto its foundation, the CRRAB Annual General Meeting. The meeting reviewed CRRAB’s purpose and structure, 2021 goals, challenges, and accomplishments. 

Attendees then worked to develop CRRAB’s goals for 2022 aligned with the aims of the Canadian Retinoblastoma Patient Engagement Strategy: 

1.  “How can we share research results with people affected by retinoblastoma?” 

• Create 4 written plain language summaries of scientific articles (one per quarter) to be shared by social media through unique posts, quarterly newsletter, and housed on the CRRAB website. 

• Host 4 new “Cup of Tea” virtual journal club events as an opportunity to discuss research in plain language, following the format successfully implemented in 2021. 
• Create video recordings of “Cup of Tea” events for wide distribution. 
• Transform “Cup of Tea” event recordings into podcast episodes for wide distribution. 

2.  “How can we include a large and diverse group in CRRAB?” 

• Enroll 12 newly diagnosed families to the Canadian Retinoblastoma Research Community. 

• Enroll 10 additional families to the Canadian Retinoblastoma Research Community. 
• Recruit a Francophone patient and health professional to join CRRAB. 
• Enroll one patient family from Quebec to the Canadian Retinoblastoma Research Community. 
• Develop a Standard Operating Procedure to guide health professionals through sharing CRRAB resources with newly diagnosed families. 

Everyone is encouraged to contribute towards actualizing these goals. Attend a Monthly Working Group meeting to see how you can contribute. 

Monthly Working Group Meetings 

Wednesday Monthly Working Group meets on the 2nd Wednesday of each month at 12:00 PM Eastern Time. 

Saturday Monthly Working Group meets on the 2nd Saturday of each month at 12:00 PM Eastern Time. 

Email retinoblastoma.research@sickkids.ca for information on how to attend this meeting or to learn how you can contribute offline. 

Networking 

The symposium offered brief breaks to allow for attendees to meet each other, connect with old friends and make new ones. The use of Gather as a platform afforded everyone the opportunity to move freely throughout the virtual space and strike up conversation at will. Much like our in-person events, members from different backgrounds, patients, health professionals and researchers could converse, make connections, broaden their networks and strengthen the bonds of our community. 

Child Life Session 

Morgan Livingstone, CCLS 

During the Child Life Session at this year’s Retinoblastoma Research Symposium children were guided through a specialized activity while adult attendees were welcome to attend to learn more about the importance of effective coping through play, preparation and education, by Certified Child Life Specialist Morgan Livingstone. 

In the session children were led through the creation of a self-expression booklet. Children created an “I Am, I Can, I Wish” booklet that asked them to think about fun facts about themselves and how to express it. Children discussed their wishes and what makes them unique through this creative activity that asks them how they see themself in the world.  

If you missed the opportunity to have your child complete the activity at the symposium you can download the instructions and worksheets below. 

Priority Research Project Breakout Sessions 

In the next session of the symposium attendees broke out into smaller  groups to learn more about projects under way addressing four of the Top Retinoblastoma Research Priorities. 

Retinoblastoma Research Priority #1: Early Diagnosis Breakout Session 

Dr. Sandra Staffieri & Dr. Ashwin Mallipatna 

Introduction: 

Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?” The importance of this priority is clear as earlier diagnosis of retinoblastoma leads to better outcomes and requires less intensive treatment for patients. 

At the 2020 and 2021 Retinoblastoma Research Symposia research workshop attendees outlined the steps required to obtain a retinoblastoma diagnosis in Canada. The groups then discussed the barriers that could appear at each of these steps that could delay the process of getting a diagnosis for a child. The members of these workshops formed a Working Group, comprised of patients, researchers and health professionals that has been developing projects designed to assess and address Priority #1. 

Summary of Session: 

Session leaders reviewed the pathway to retinoblastoma diagnosis outlined by past workshop members and invited suggestions for refinement. Attendees also discussed the work underway by other groups globally that are also aimed at addressing this priority and understand whether there is a possibility for collaboration. Leads of the working group projects then presented their progress on each study.  

Suggestions from this session include: 

• Reach out to those leading projects aimed at improving early diagnosis globally to expand or replicate these efforts in Canada.
• Develop a study examining the clinical curriculum taught in Canada for retinoblastoma.
• Work with advocacy groups around the world to translate the surveys being used in the study investigating barriers to retinoblastoma diagnosis.
• Develop awareness campaigns aimed at early childhood educators and childcare centres.

Next Steps: 

The projects generated around this priority continue to be developed by the Priority #1 Working Group which meets regularly. To join us the next meeting please contact us at retinoblastoma.research@sickkids.ca. 

Retinoblastoma Research Priority #2: Second Cancer Screening Breakout Session 

Dr. Stephanie Keltke & Ivana Ristevski 

Introduction:

Retinoblastoma Research Priority #2 asks, “What second cancer screening is optimal for heritable retinoblastoma survivors (including whole body magnetic resonance imaging)?” Approximately 45% of retinoblastoma patients have the heritable form of retinoblastoma which increases the risk of second cancers later in life. In order to diagnose second cancers, effective screening protocols need to be created and evaluated. Currently, there are no evidence-based screening guidelines. 

This session proposed a new study to evaluate the effectiveness of molecular screening of blood for early second cancer detection in survivors of heritable retinoblastoma.

Summary of the Session: 

Participants in this study discussed the idea of the study and through this discussion, the research team was able to simplify the scientific objectives and rationale such that attendees had a very clear idea of the project’s background, aims, potential impact on the retinoblastoma community. 

Once a clear understanding of the project was established, participants discussed recruitment for research participants. Patient partners shared insight into where they connect with other retinoblastoma families and where they get information about retinoblastoma including social media and other cancer or retinoblastoma organizations. Non-patient partners offered input into reaching patients through professional organizations and retinoblastoma clinics. Members of CRRAB were also able to reference past CRRAB projects and share what has worked when recruiting for studies in the past. 

Next Steps: 

The feedback will be used to develop a study recruitment strategy and plain language summary of the project. A new working group will be formed and regularly meet to discuss the next steps of the project. To join this working group please email retinoblastoma.research@sickkids.ca.

Retinoblastoma Research Priority #3: Psychosocial Support Breakout Session 

Kaitlyn Flegg, Efy Zouridaki, Polina Kargapolova 

Introduction: 

Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents, and families (at diagnosis and beyond)?” In 2017 focus groups of retinoblastoma families found that psychosocial support is largely missing from care. Additionally, research has consistently demonstrated that Canadian retinoblastoma patients, parents, and survivors desire more psychosocial support. 

In 2018 a CRRAB working group co-designed a study to address this priority area. Despite five grant applications, funding has not yet been secured for this project. Therefore, a scaled-back study version of the project was proposed, focusing on determining supportive care needs and distress of retinoblastoma parents and survivors. 

Summary of the Session: 

Participant recruitment for this study will begin in the summer of 2022. A robust recruitment plan is a central part of this project as we aim to accurately characterize the needs of a diverse group of retinoblastoma, parents and survivors. In the session, attendees were asked to provide feedback on the social media study recruitment materials developed. Attendees emphasized the importance of conveying the value of this study as an essential component of participant recruitment. Patient champions were suggested as potential co-leaders to expand recruitment efforts. 

Suggestions from the session included: 

• Simplify language used in social media recruitment materials to better convey study purpose. 
• Highlight the importance and impact of the project by relating it to a top research priority. 
• Ensure best practices for social media accessibility are employed (I.e., concise wording, acceptable colour contrast, use of alternative text). 

Next Steps: 

Feedback will be used to improve study materials. The progress of study development will be shared at the CRRAB Monthly Working Groups.  

Retinoblastoma Research Priority #11: Novel Agent Breakout Session 

Roxanne Noronha 

Introduction: 

While CRRAB places a focus on the top 10 retinoblastoma research priorities, during the initial priority setting exercise in 2017 a total of 30 priorities were ranked. Priority #11 states asks for more clinical trials of novel agents, targeted agents added to “backbone” chemotherapy, or intra-arterial chemotherapy to improve eye-salvage rates be conducted. In order to reach the stage of conducting clinical trials, novel agents must first be tested in models or samples. Therefore, a robust collection of biological samples from patients are needed to conduct this research.

The SickKids Department of Ophthalmology Biobank was launched in 2020 with the objective to collect and store biological samples and associated data relevant to vision and eye health and make this available to researchers conducting studies.

Summary of the Session: 

This session highlighted the importance of biobanking by underscoring the fact that conducting research using resource developed by the biobank allows us to learn more about how retinoblastoma works which may provide insight on how to identify it and treat it more safely to ultimately improve patient outcomes. Session attendees were then asked to consider two main questions related to participant recruitment and patient engagement in research.

When discussing how to improve the process of recruitment it was suggested that foremost the research team must be cognizant of the stress a family with a new diagnosis is under and to tailor the recruitment activities around the needs of the family. Then, when discussing the sample access process for researchers and what study qualities are important to patients it was clear that studies that most directly impact patient outcomes should be prioritized and that researchers must have a strong scientific rationale for conducting the study with the banked samples.

Next Steps: 

Study activities for this project are ongoing. Feedback will be used to revise study materials to improve study recruitment and increase patient engagement. If you are interested in supporting this project please email dovs.biobank@sickkids.ca.

Thank You 

We would like to thank everyone who supported and attended the 2022 Virtual Retinoblastoma Research Symposium. Without your active involvement we are unable to build patient-oriented retinoblastoma research! 

 

Calling All Champions!

The Retinoblastoma Research Champion program aims to have a diverse group of individuals affected by retinoblastoma act as volunteer ambassadors of CRRAB and its activities. Champions are members of CRRAB who draw from their own lived experience to:

• encourage sign-up to the Canadian Retinoblastoma Research Community
  • Examples: repost information about the Retinoblastoma Research Community to social media groups, share information with local relevant health professionals, or seek out new retinoblastoma families through personal connections or online forums to connect them to CRRAB
• promote patient partnership in research
  • Examples: share their experience in partnering in research to help others understand how they can participate, reach out to their personal network to identify other patient members to partner on research projects, or share information on upcoming CRRAB meetings

Champions share their personal story and reach out to their networks and members of their communities to promote CRRAB, using their personal and professional skills to extend CRRAB’s reach. You can read stories from past and current Champions Ivana, Jay, Jill, Leslie, Taline and Tara in the Retinoblastoma Research and You! Booklet and learn how they got on the path to becoming CRRAB partners. 

If you’re interested in joining the RB Research Champion team, please contact us at retinoblastoma.research@sickkids.ca. We hope that Champions make a one-year commitment to the role and continually share information about CRRAB and our initiatives.  

“Cup of Tea” Journal Club March 2022

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, March 15, 8:15 – 9:00 PM ET. Our speakers will be Mitch Hendry, retinoblastoma survivor, and Dr. Jennifer Steeves, scientist. Together they will be discussing the article Early monocular enucleation selectively disrupts neural development of face perception in the occipital face area for which they recently wrote a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community: bit.ly/RBres.

Event Details

Time: Tuesday, March 15, 2021, 8:15 PM ET

Duration: 45 minutes

Topic: Early Monocular Enucleation and Neural Development

Meeting Link: https://zoom.us/j/97543431307?pwd=enU4aVZEaUhxVWFLRS9NUHAvSkIyUT09

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If you missed our last “Cup of Tea” event on OCT-Guided Localization and Photocoagulation of Retinoblastoma Tumors led by Alena Vincent you can watch the recording now.

December Regional Working Group: COVID-19 and Retinoblastoma

(This event happened on December 11, 2021. You can view the video here. Please note the online question form is now closed)

The Canadian Retinoblastoma Research Advisory Board (CRRAB) will be hosting a special event during our December Regional Working Group to answer questions about the COVID-19 vaccine and retinoblastoma (RB). We are offering this event to our community to answer the questions many have been asking about keeping their families safe during the COVID-19 pandemic. 

Members of the RB community are invited to anonymously submit questions for this event via our online form: forms.gle/aaXDhG8ELvvhq8cb8

Questions will be collected until December 3, 2021. These questions will be answered by retinoblastoma health professionals during the event. If time permits audience members may be able to ask questions during a live Q&A session during the event. 

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals and researchers to participate in this free virtual event. Please share the online question form and information about this event with others who are impacted by retinoblastoma and would benefit from attending. In order to stay up to date on events such as this one, join the RB Research Community: bit.ly/RBres 

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Event Details

Time: Saturday, December 11, 2021, 12:00 PM ET

Duration: 60 minutes

Topic: COVID-19 and Retinoblastoma 

Video Link: https://youtu.be/yhm5J4f4kP4

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COVID-19 Vaccine Resources for Families 

SickKids COVID-19 Vaccine FAQs

Michael Garron Hospital Community Q&A on COVID-19 Vaccines for Children & Families 

SickKids COVID-19 Vaccine Consult Service (only available for Ontario residents)

“Cup of Tea” Journal Club December 2021

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, December 21, 8:15 – 9:00 PM ET. Our speakers will be Dr. Sameh Soliman, ophthalmologist , and Alena Vincent, retinoblastoma survivor and parent. Together they will be discussing the article Secondary Prevention of Retinoblastoma Revisited: Laser Photocoagulation of Invisible New Retinoblastoma for which they recently wrote a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community: bit.ly/RBres.

Event Details

Time: Tuesday, December 21, 2021, 8:15 PM ET

Duration: 45 minutes

Topic: OCT-Guided Localization and Photocoagulation of Retinoblastoma Tumors

Meeting Link: https://zoom.us/j/95697603889?pwd=V1VPcEFmZU9KSGsxTUlEaVJrV01Idz09

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If you missed our last “Cup of Tea” event on Retinoblastoma Patients’ Attitudes Concerning Genetics led by Mary Connolly-Wilson you can watch the recording now.

Interview with the Author: Taline Dorna

Author: Ivana Ristevski and Taline Dorna

Taline Dorna is an elementary school teacher, dedicated CRRAB member, and now a new author as well! Taline presented a draft of her book, The Extraordinary Eye at the 2020 Retinoblastoma Research Symposium and her dreams of publishing her work have since come to fruition. CRRAB co-lead Ivana interviewed Taline to find out more about her book and future plans. 

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Q: What inspired you to write this story? 

Our lives changed when our youngest child was diagnosed with retinoblastoma at 5 months of age. I came home to my then 3 ½-year-old and 2-year-old and found myself for the first time at a loss for words. I didn’t know where to begin or how to explain what had happened to the newest edition to our family. I decided that if I put on my teacher hat, I would be able to figure out a way to speak to my kids on their level about their brother’s diagnosis. This resulted in the creation of my very first children’s storybook, The Extraordinary Eye. 

Q: What is the story about? 

The story is about a little boy (my youngest child) who loses his eye to a rare ocular cancer called retinoblastoma. The story walks the reader through the stages of discovering ‘the glow’, diagnosis, treatment, and recovery. It includes terminology like retinoblastoma, ophthalmologist, tumor, ocularist among others, with simple definitions to help children and people of all ages understand.  

Q: Why was it important for you to share your story? 

It was important for me to be able to share my story, to put out a hopeful message of awareness so that children would not feel stigmatized with their eye prosthesis. I also wanted to raise awareness about retinoblastoma with the broader community. As an educator, I feel strongly about the expression, ‘knowledge is power’ because it truly is. Understanding what retinoblastoma is and knowing what to look for can save a child’s life. Many families who haven’t directly been touched by retinoblastoma, purchased my storybook, and learned about something new. They now know that something as innocent as a white ‘cat’s eye’ glow in a photo of a child can be a sign of retinoblastoma known as leukocoria, as this was what lead to my child’s retinoblastoma diagnosis. Leukocoria is also an indication of a range of other serious intraocular disorders.  

Q: Why did you choose to tell your story through a children’s book? 

I chose to tell our story through a children’s book because I wanted to help children affected with retinoblastoma feel good about themselves by embracing confidence and spreading a message of inclusivity among others, as well as spreading much needed awareness. My storybook includes words with definitions to help young children with retinoblastoma understand what may have happened to them or to share their story with others in the form of an illustrated storybook that would be easy for people of all ages to understand. In my case, I searched high and low for storybooks similar to what I wrote and found that they were very few and far between. When my son was diagnosed, my other children were under the age of 4 and I needed to help them understand what was happening to their sibling. This lead to the epiphany of eventually writing a storybook to help facilitate this. Educators may also want to utilize this book as a tool to teach inclusiveness within their classrooms, or perhaps a student with retinoblastoma and/or a prosthesis may want to share their story with the class. This is where this book comes into play. The main character in the story is a boy with no name. The reason why I applied no names to the boy or any of the people in the story, is to make it relatable for every child reading my book. 

Q: What do you hope readers take away from your book? 

I hope to instill confidence within my readers no matter what differences they may have. What makes you different, makes you stronger, unique and extraordinary. I often tell my son that he’s extraordinary. When he asks me why and what that means, I explain that they took his ordinary eye and sprinkled it with a little bit of ‘extra’, making it extraordinary. I tell him, “There is nothing you can’t do that others can”. I sometimes use the example of an ice cream sundae. You can take a scoop of plain vanilla ice cream and put it in a bowl, but that’s just plain and ordinary. Now imagine taking that ordinary vanilla ice cream and adding some sprinkles, maybe some candy, chocolate sauce, whip cream and a cherry on top. We just made an ordinary bowl of vanilla ice cream, into an extraordinary ice cream sundae!  

Q: How did the accomplishment of becoming a published author make you feel? 

I felt conflicted at first. I didn’t want to put my son’s story out there for all to see, but I knew that writing and publishing this story would help others like my son, or others with unique differences feel good about themselves, while spreading retinoblastoma awareness. This is why I didn’t attach a name to the people in the book, making it relatable for all children, everywhere.  

Q: What are your future plans regarding the book? 

I want to spread the message about my book to as many retinoblastoma survivors, patients, families and friends in order to spread a message of hope while raising awareness and taking away the stigma behind having a prosthesis. I am also considering translating the storybook into other languages. 

Q: Is there anything else you would like to share about your experience? 

My husband and I are involved with CRRAB. My husband is part of the Priority 1: Early Diagnosis Working Group, and I’m a part of the Regional Working Group. We both endeavour and strive to make a difference and help support research efforts in retinoblastoma. My husband is a software developer and I’m an elementary teacher by profession, as a result we’re able to apply our skills and experience in something that can truly make a difference outside of the realm of our work. 

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Taline’s book, The Extraordinary Eye is available for purchase on Amazon. Click here for more information on the book and related merchandise, or to connect to Taline on social media. A portion of proceeds from sale of the book will be donated to retinoblastoma research. 

Welcoming New Members

Retinoblastoma affects 1 child in every 15,000 live births, with about 23 children being diagnosed in Canada each year. We estimate that there are nearly 2,000 retinoblastoma survivors in Canada, and while retinoblastoma is a rare disease, when we consider everyone touched by retinoblastoma, from family and friends to professionals in the field, the community is quite large. 

The Canadian Retinoblastoma Research Community was created as a mechanism to formally connect members of the Canadian Retinoblastoma Community who are interested in research. This group of retinoblastoma patients, health professionals, and researchers receive updates on retinoblastoma research and information on opportunities to partner in research.  

Retinoblastoma research that includes patients as equal partners improves the quality of research results, accelerates the uptake of research findings to in turn, improve patient outcomes, and ensures that research outcomes are aligned with patient needs.  

The Canadian Retinoblastoma Research Advisory Board (CRRAB) is composed of patients, health professionals, and researchers from across Canada who participate in patient-partnered research and related activities and events. CRRAB leads a Patient Engagement Strategy with 3 main aims:  

1. share research results with patients;  
2. identify and include a large and diverse group of patients in research; and
3. promote research that is created and led by patients.  

CRRAB was designed to be led by volunteer patients, health professionals, and researchers, with administrative support provided by the retinoblastoma research team based at The Hospital for Sick Children (Toronto, Canada).  

CRRAB members partake in a variety of activities to support our patient engagement aims including: 

• organizing and hosting the annual Retinoblastoma Research Symposium  
• facilitating project-specific patient partnerships to develop and advance retinoblastoma research projects  
• promoting the Canadian Retinoblastoma Research Community  
• promoting education, advocacy, and support for retinoblastoma research  
• hosting an awareness table during retinoblastoma follow-up clinics to showcase the Canadian Retinoblastoma Research Community  
• offering tools and platforms for patient partnership in research  
• building connections between patients, health professionals, and researchers

Reach out to us or attend an upcoming CRRAB event such as the annual Retinoblastoma Research Symposium, Quarterly General Meetings, Regional Working Groups or Project-Specific Workshops & Working Groups to get involved in ongoing activities. The continued success of CRRAB rests on the involvement of everyone in the Retinoblastoma Research Community. 

Patient Perspective: Retinoblastoma Research & You! Booklet Development Workshops

Author: Alena Vincent

My name is Alena Vincent, I am a bilateral retinoblastoma survivor as was my mom before me and as is my daughter after me. I was invited to join CRRAB in the fall of 2018 and since then I have been involved in research meetings, symposiums, and research projects such as the Retinoblastoma Journey Maps.
 
This year I was asked to assist with the development of the Retinoblastoma Research and You! Booklet. For me, this was, quite honestly, the most exciting CRRAB project I’ve been privileged to be part of. I had such a fantastic experience. It was wonderful to see new faces and hear the opinions of other retinoblastoma parents and survivors as well as all the amazing professionals who made up the manpower behind this beautiful booklet. 

As a parent of a child with retinoblastoma, those early days after diagnosis are heartbreaking and stressful. It can be a very lonely and dark time and you feel like you’re getting a lot of paperwork to sign, but not a lot of information on what the future might hold. This booklet is not only a resource guide and research tool, but also a beacon of hope. The stories provided in its pages show that other children not only survived but thrived. It shares the message that we are a community filled with incredible patients, survivors, parents and professionals, and how crucial input from those affected is to the continued improvement of care. It gives something physical to those affected by retinoblastoma to know they are not alone, and that they will be heard, cared for, and valued. 

Opportunities to be Involved

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

Social Media Team 

Join our existing group of volunteers and help us develop new content for our social media platforms! Volunteer two hours per month to create graphics and captions for the CRRAB Twitter, Facebook, and Instagram pages. 

Social Media Feature

Share your experience with retinoblastoma by doing a takeover on CRRAB’s Instagram page. Create short videos and participate in Q&A to inspire others to join the Retinoblastoma Research Community. 

Podcast Team

Join the volunteer team that transforms the recordings of popular Cup of Tea journal club events into a podcast format. Edit the recording files, test audio quality and listening experience and support the overall development of this resource.

French Translation 

CRRAB aims to better engage with the French-speaking retinoblastoma community in Canada. Please help us recruit these individuals by translating current CRRAB content and creating new material in French. Examples of materials include social media posts and blog posts. 

Article Summaries 

Write a plain language summary of a retinoblastoma research article. Patients together with healthcare professionals or researchers write a short summary of a recent scientific article and provide personal comments or critiques.  

Regional Working Groups 

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

RB Research Champions 

Act as a volunteer ambassador of CRRAB to promote patient engagement in research to patients, healthcare professionals, and researchers by sharing your story and participating in community outreach.  

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