My Experience at the 2024 Retinoblastoma Research Symposium

Author: Kim Doucet Boyer

I attended the 2024 Retinoblastoma Research Symposium in Halifax. I am a RB survivor who did not realize how much I physically, mentally, and spiritually needed to attend this event. 

I was nervous as my wife and I walked into the auditorium where the event was held, but right away, we were greeted with such warmth and kindness. Since we were a small group in Halifax, the vibe was very intimate, comforting, and inclusive. It even took us a few minutes to realize that we were mingling with an oncologist and a doctorate student! They made us feel like we were peers, equals, friends even.

As soon as the event officially started, we were hooked. The day went by so fast, and we learned so much about RB and its community. The presentations were fantastic, both from the healthcare professionals and the people affected directly or indirectly by RB. Many times, we were encouraged to voice our opinions and share our perspectives on different topics. 

The Symposium is divided into well thought of sessions, ranging from informative presentations about RB research development to workshops where all the participants get to discuss a specific topic (psychosocial needs of RB survivors, prosthetic care, distress level, etc.). My personal favorite was on the second day of the Symposium where we got the chance to hear four testimonials from RB survivors. In my opinion, the variety of activities during the Symposium is sure to please everyone, whether you are a health-care professional, a researcher, a family member or a survivor. 

It truly warmed my heart, boosted my confidence, and changed my perspective on life to realize that I am not alone. There are many RB survivors out there who face the same challenges that I do.  Together, we can make our journeys easier.  Some conversations are uncomfortable or difficult to have (second cancer risks, psychosocial effects of RB, trauma, etc.), but they are necessary to evolve and to ensure a brighter future for us and for those to come. 

Overall, I would say that the 2024 Symposium was an immense success. I would highly recommend it to anyone who is interested in learning more about RB, or to anyone who needs to feel a connection with the RB community.

2024 Retinoblastoma Research Symposium Summary

The 2024 Retinoblastoma Research Symposium was a huge success! On April 20 & 21, 2024 the retinoblastoma community gathered to learn from each other, connect with their peers, and advance patient-oriented retinoblastoma research.

This year marked the first multi-site in-person locations for the event in Vancouver, Toronto, and Halifax as well as online. Katherine Paton, Ophthalmologist, hosted the Vancouver location. Helen Dimaras, Scientist, hosted the Toronto location. Bruce Crooks, Oncologist, hosted the Halifax location. Together with a team of volunteers at each location, we welcomed 64 in-person and 34 virtual attendees.

**Recordings of the sessions are all available on our YouTube channel “Retinoblastoma Research”. You can access the playlist here.

Keynote Presentations

Jay Kiew

To kickoff the event, Jay Kiew gave an engaging and thoughtful presentation which shared a deeply personal and inspiring journey of resilience and finding joy during the most challenging times. Drawing from his own experiences as a retinoblastoma survivor and a change navigation strategist, Jay highlights the power of community, the importance of nurturing wonder and possibility, and how shifting our perspectives can help us overcome adversity. Drawing inspiration from the Wright brothers’ pursuit of flight and his own experiences as a retinoblastoma survivor, ​Jay encourages the audience to connect with one another, explore the realm of the possible, and evolve their vision for the future, even in the face of life’s toughest challenges.

Mari Somerville

On day 2 of the symposium, Mari Somerville discusses the importance of patient-oriented research and the benefits of engaging youth in the research process. Marie shares her experience in a research project called “Educate” where they co-designed discharge communication tools for the pediatric emergency department with clinicians, parents, and youth. Mari’s presentation highlights the challenges and opportunities encountered in this co-design process, emphasizing the valuable insights and perspectives that youth brought to the research. Overall, Mari encourages researchers to actively engage youth in research studies, providing strategies and recommendations for meaningful youth involvement.

Multidisciplinary Panels

Ask the Health Professionals About Retinoblastoma

Speakers: Jonathan Bush, Bruce Crooks, Katherine Paton, Aparna Ramasubramanian

Jonathan Bush, a pediatric and perinatal pathologist described the critical work that pathologists do in examining and assessing retinoblastoma specimens. He explained the detailed process of examining the enucleated eye, including macroscopic and microscopic evaluation to identify key features that guide treatment decisions. Jon also highlighted exciting areas of pathology research, such as the use of digital imaging and machine learning to enable more sophisticated analysis of tumor samples.

Bruce Crooks, pediatric oncologist and host of the Halifax location of the symposium, provided an overview of the Children’s Oncology Group’s research efforts, including trials evaluating chemotherapy regimens and the “Molecular Characterization Initiative” that uses comprehensive genetic profiling to identify personalized treatment approaches.

Katherine Paton, ophthalmologist and host of the Vancouver location of the symposium, emphasized the importance of the Tumor Board in ensuring equitable access to expert care, no matter where a patient is located in Canada. She describes how the Tumor Board facilitates multidisciplinary discussion, second opinions, and coordinated decision-making to provide the highest quality, evidence-based care.

Apart Ramasubramanian, shared the exciting progress being made with chemotherapy plaques, a targeted local therapy that delivers chemotherapy directly to the eye. She also shared results from a phase 1 clinical trial, which shows the potential of this approach to effectively treat retinoblastoma with minimal systemic toxicity. She emphasizes the importance of this type of localized, affordable treatment, especially for patients in low-resource settings.

Ask Patient Partners About Patient Engagement in Research

Speakers: Ella Bowles, Michelle Prunier, Lynn Tarabey, Ivana Ristevski

Ella Bowles, retinoblastoma patient, explains how DepictHealth can anchor the circle of care and provide patients with a view of the entire care team and can enable research on retinoblastoma research priorities such as second cancer screening, optimal follow-up, and prospective treatment studies.

Michelle Prunier, retinoblastoma survivor, discussed her involvement in research, advocacy, and her current role as a patient partner advising on the development of a patient-reported outcome measure for retinoblastoma patients. Michelle’s role involved ensuring the questions were comprehensive and understandable, particularly for younger patients, and that the content reflected the diverse experiences of retinoblastoma patients.

Lynn Tarabey, retinoblastoma survivor from Lebanon, discusses her involvement with the Rare Pediatric Eye Cancer (RPEC) biobank and the importance of patient advocacy and engagement in research. The biobank is a facility that collects and stores high-quality data on childhood eye cancers, including biological samples, health information, and medical images. Lynn highlights the RPEC biobank’s Patient Advocate Committee, which provides a platform for patients to engage with and contribute to the process.

Ivana Ristevski, parent of a retinoblastoma survivor, shares her experience in developing and testing the Retinoblastoma Journey Map, a tool designed to help patients track their care and share their medical history on a fun and engaging board with retinoblastoma specific stickers. Her son, Nikola, presented his board and explained how he uses his Retinoblastoma Journey Map to track and talk about his retinoblastoma journey.

Research Workshops

Early Diagnosis: Understanding How 3D Eyes Can Help

Facilitators: Ashwin Mallipatna and Jillian Purdy

The workshop discussed the use of a 3D-printed model of a baby’s eyes to help train general practitioners on performing the red reflex test for early diagnosis of retinoblastoma. The goal of the workshop was to determine how to encourage more frequent and proper use of the red reflex test by general practitioners. For next steps, the workshop leads are looking for a patient partner to help promote the use of the 3D-printed model and gather feedback on its potential

Psychosocial Care: Understanding Patient Needs

Facilitators: Kaitlyn Flegg and Marissa Gonzalez

The workshop explored preliminary research on psychosocial impacts and distress experienced by patients and parents to critically analyze the findings. The next steps involve planning focused groups to refine the questions for a larger survey to better understand psychosocial needs.

Understanding Your Genetics: Co-Creating Educational Tools

Facilitators: Helen Dimaras and Mitch Hendry

The workshop initially focused on improving genetic test reports, but the discussion expanded to exploring the potential for video-based educational resources. The plan is to create a series of videos featuring individuals with different genetic diagnoses sharing their stories, which could then be expanded to cover various aspects of the genetic testing journey.

Patient Reported Outcome Measures: Communicating How You’re Doing

Facilitators: Farheen Khan and Ivana Ristevski

The workshop discussed a project to create a patient-reported outcome measure (PROM) questionnaire, focusing on the “eye appearance” section and providing feedback on the relevance of the questions. The next step is to gather 200 participants to fill out the questionnaire, which will help refine the tool and make it more valuable for facilitating discussions between patients and clinicians.

If you are interested in partnering on any of these research projects, please email retinoblastoma.research@sickkids.ca and let us know which project you are interested in. Those who attended the workshops will already be on the contact list and will receive project updated and meeting invitations.

Child Life Program

A Children’s Program was offered at all three locations for the children of the attendees of the symposium. This program allows the adults to attend the main program while their child(ren) are engaged in an interactive and medical play based program.

Morgan Livingstone, Certified Child Life Specialist and planned the overall program structure which included the designing of “my special eye” and led the program with her team of volunteers in the Toronto location. The children attending participated in activities such as creating a giant game board, building structures out of legos, reading books about retinoblastoma and relaxing with a bucket full of sensory toys.

Ashley Tolerton and Megan Weibe, both who are Certified Chid Life Specialists led the program in the Vancouver location. The children attending participated in activities such as painting outdoor in the garden, colouring, sensory play with various objects, and medial play.

The Halifax location kept their participant occupied with many physical and relaxing activities.

We encourage all our in-person attendees with child(ren) to bring them to the next symposium so they may interact with other retinoblastoma patients, siblings, and other non-affected children of our researchers and health professionals.

Thank You

We would like to thank everyone who attended the 2024 Retinoblastoma Research Symposium and all our volunteers and funders who made this event possible. Without your commitment and involvement, we would be unable to support patient-oriented RB research!

Patient Engagement in Biobanking 

Author: Frances Argento

My name is Frances and I am a first year Master of Science student at the University of Toronto. Under the mentorship of Dr. Helen Dimaras I am conducting research at the Hospital for Sick Children (SickKids) in the Department of Ophthalmology and Vison Sciences. My research falls at the intersection of patient engagement and biobanking.  

What is a Biobank?  

A biobank is like a library, except instead of storing books, it holds samples of human tissue. This may include blood, tumors or fluid, as well as health information and medical images. Information in the biobank can be “borrowed” by scientists from all over the world to help them conduct research. At SickKids, there is a biobank dedicated to rare childhood eye cancers, also known as the Rare Pediatric Eye Cancer Biobank or “R-PEC Biobank”. The R-PEC Biobank collects high quality data on childhood eye cancers and shares this information to promote future research on things like child vision and eye health. 

What is Patient Engagement  

The Canadian Institute of Health Research (CIHR) defines patient engagement as the “meaningful and active collaboration in governance, priority setting, conducting research and knowledge participation”. When patients are meaningfully engaged in research, it can positively promote both the quality and impact of research being produced! It is also important to note that the term patient widely refers to anyone with lived experience of disease, including informal care givers, family and friends.  

Patient Engagement in the R-PEC Biobank  

One important way patients are involved in the R-PEC Biobank is through the Patient Advocate Committee (PAC). The PAC is a group of patient partners in research who use their lived experience to help empower scientific advancements.  

A significant part of my research experience has been working with patient partners to help develop the PAC. To date, there are five patient partners on the PAC, all with lived experience of retinoblastoma. The PAC meets online monthly to conduct research and collaborate on projects. 

The first step of the PAC was to develop a patient engagement plan. Through patient partner-oriented discussions, we established the PAC’s research priorities and goals. One of the first tasks the PAC decided to work on was recruiting more patient partners. As a result, the PAC created a “Patient Advocate Committee Information Guide” to effectively recruit new members and communicate the importance of patient partnership in research. The PAC is also in the process of creating a consent “tool” to enhance informed consent discussions for the R-PEC Biobank donors and their families.  

Future Steps and Rb Community Impact 

It is exciting to see everything that the PAC has accomplished over the past 6 months, and I look forward to working more with this team to continue its work. A future evaluation of patient engagement in the R-PEC Biobank and PAC is also planned to understand exactly which practices have the greatest positive impact on the R-PEC Biobank. Overall, the results from this experience promise to provide a framework for establishing meaningful patient partnership in biobanking and contribute positively to the field of rare eye cancer research.  

If you have questions about the R-PEC Biobank, please email retinoblastoma.research@sickkids.ca

Engaging Youth in Research: Examples and Opportunities for Improving…

Author: Mari Somerville

Patient-oriented research is defined by the SPOR Evidence Alliance as ‘meaningful and active collaboration in decision-making, setting priorities, conducting research, and sharing (disseminating) research findings to ensure that the perspectives of patients and members of the public are considered in research priorities and in shaping the evidence and care they receive’. By engaging patient and/or public partners in research, we may design more effective, relevant and meaningful products and services. Particularly when working on research related to specific medical conditions, patient partners provide valuable insight about their experiences and needs living with the condition. As a clinician, I have worked closely with patients to provide care, but as a researcher, I now aim to include patient and/or public partners as often as I can in my research studies. 

There are many ways to engage patients in research, however, best practices suggest patients be involved through the entire process, from question formation to knowledge dissemination. The Canadian SPOR Evidence Alliance identifies different levels of engagement as part of a spectrum, including: i) Inform; ii) Consult; iii) Involve; iv) Collaborate; and v) Empower. The most meaningful engagement includes ‘collaborate’ and ‘empower’, where patients play the most active role in the research process. 

My experience engaging patients in research began while completing my doctoral training in Australia. I held a part-time position as research coordinator for a project where we co-designed a culturally appropriate healthy weight service for Indigenous families and their children. To ensure this work was culturally appropriate and meaningful for the Indigenous community, we worked hard to engage local community members in the research process. This included creating a steering committee with researchers, clinicians, an Elder, and a mom and child dyad who identified as Indigenous. This steering committee helped identify the top concern(s) around weight management services and to help co-design a solution. By using a co-design methodology, we also spoke with local Indigenous mums and bubs groups to get their thoughts on what a healthy weight service should look like, and we spoke with Aboriginal Health Workers to understand the needs from a clinical perspective. A member of our research team who identified as Indigenous helped facilitate these community-based focus groups, collected data, and analyzed results. Through this process and by engaging patient/public partners in the research process, we were able to design a culturally appropriate healthy weight service for Indigenous families, that was led by and for the end-users.

More recently, I supported another co-design research study called EDUCATE (emergency department discharge communication strategies), which was led by Dr. Janet Curran and the Strengthening Transitions in Care lab at IWK Health in Nova Scotia. This project involved patient/public partners in two ways. Firstly, a patient (parent) partner was a co-investigator on the research project. This parent partner had lived experience of attending the emergency department with their child and helped write and apply for grant funding to run the research study. This parent partner was then involved in all team meetings and helped collect and analyze data, write manuscripts, and help disseminate findings. We also engaged parents, youth and clinicians throughout the research process, following the co-design methodology. This included two groups of about 10 individuals who had either been a patient or caregiver of a patient who had visited a pediatric emergency department, or was a pediatric emergency physician or nurse. Each group was focused on a medical condition (asthma or head injury), relevant to their lived experience. By engaging patients in both ways, we collected important information about the needs and preferences of the patient population for which our health care tools were being designed. 

While patient-oriented research is important, it can be challenging to find patient partners who meet your specific criteria or have lived experiences relevant to your research study. Luckily, there are many organizations that can help you identify patient/public partners such as the National SPOR Evidence Alliance, or local SPOR institutes, such as MSSU (Maritime-specific). These organizations will ensure that patient/public partners are fairly compensated for their time as part of research studies, and they also offer training for individuals who would like to learn more about effective patient-oriented research. Through my own experiences working with patient/public partners, I believe that patient engagement in research can be extremely beneficial and should be a priority for any researcher working in health care.

When cancer disrupts our lives, how do we flourish…

Author: Jay Kiew

About My Keynote for the 2024 Retinoblastoma Research Symposium

Like so many stories shared through the members of the Canadian Retinoblastoma Research Advisory Board (CRRAB), my life began with a battle against retinoblastoma. In my keynote for the 2024 Retinoblastoma Research Symposium, we will explore the dynamics between developing resilience and finding joy in our tough times – while chatting through the impact of community on cancer. 

Join us on a journey to explore how our deepest struggles can unveil unexpected opportunities for joy and growth, inspiring us to reimagine our futures.

My Bio

As a change navigation strategist and world-renowned keynote speaker with more than 13 years of strategy and human capital experience I have created more than $2B of impact for 400+ executives by designing, developing, and delivering organizational transformation, but my story extends far beyond the professional arena. 

I am a half-blind cancer survivor and my life is a testament to resilience in the face of adversity. By blending my professional expertise and personal resilience, I equip leaders to hack through the thick of change and disruption.

My corporate career includes working at Deloitte, TELUS, and ADP, where I have led mission-critical strategic transformations. This included a $150-million primary care health policy reform, $13-million tech transformations, doubling app users from 1 to 2 million, and scaling 15 product lines to $35 million in 12 months.

At the age of 19, I was the world’s youngest Distinguished Toastmaster and have since been featured in the Financial Times, Globe and Mail, Financial Post, Ivey Business Journal, Change Leadership, and more.

Jay holds an MBA from the Ivey Business School and is a Prosci-certified PMP and Insights psychometric practitioner.

2024 Annual General Meeting

The 2024 Canadian Retinoblastoma Research Advisory Board (CRRAB) Annual General Meeting (AGM) was a huge success! Thank you to all the meeting attendees and volunteers. 

We had a fantastic turnout this year with 13 patient and 17 non-patient partners working together to build a plan for 2024. Session recordings are now available on our YouTube channel “Retinoblastoma Research”.  

The focus of the AGM was to discuss how CRRAB should share research results, one of the three aims of the Patient Engagement strategy. Ideas centred around CRRAB tools: Cup of Tea, website, social media, and blog. We also selected themes for future Cup of Tea events and blog posts.

“Cup of Tea” Journal Club March 2024

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, March 19, 2024 8:00 – 9:00 PM ET. Our speakers will be Ella Bowles, retinoblastoma patient and Dan Gombos, Section Chief of Ophthalmology at MD Anderson Cancer Center in Houston, Texas. Together they will be discussing the article, “Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma” for which they will create 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. If you cannot access the original article, please contact us at retinoblastoma.research@sickkids.ca.

In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, March 19, 2024, 8:00 PM ET

Duration: 60 minutes

Topic: Long-term follow-up for heritable retinoblastoma

Meeting Link: https://zoom.us/j/94388654905?pwd=T3Y5c1lYZjNnb1ZOWUI1ZXhKMlZBQT09

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If you missed our last “Cup of Tea” event on, “Eye-related quality of life and activities of daily living in pediatric retinoblastoma patients: a single-center, non-controller, cross-sectional analysis” led by Genevieve McCarthy and Margaret Reynolds, you can watch the recording or listen to the podcast version now.

Examining the Influence of Social Determinants of Health on…

Author: Omer Jamal

In the fall of 2022, I began pursuing a master’s degree in Dr. Helen Dimaras’ lab at the Hospital for Sick Children Department of Ophthalmology. My research experiences lie in pediatric ophthalmology, and social determinants of health (SDH) which are non-medical factors that affect health outcomes (ex. income and social status, employment and working conditions, housing and transportation).  In the realm of pediatric oncology, rare eye cancers such as retinoblastoma pose significant challenges not only due to their medical complexity but also because of the multitude of ways in which social determinants of health (SDH) can influence outcomes. Despite this, there is limited evidence on the specific impact of social determinants of health (SDH) on rare pediatric eye cancer (R-PEC) outcomes in Canada. Thus, in our project we examine (i) the availability of SDH data in the electronic health record, and (ii) the association of R-PEC patient SDH with (a) medical visit attendance, (b) age and stage at diagnosis, (c) clinical outcomes, (d) emergency visits, and (e) care plan delay.  

Through this 5-year study that looked back on past health data, we found that children from, lower socioeconomic backgrounds, non-white race, low material resourced communities, and rural communities, were associated with poor medical visit attendance, delayed diagnosis, greater visual impairment, higher emergency room visits, and increased delays in care. Medical professionals and healthcare systems addressing unfavorable SDH by implementing a more holistic approach to healthcare that includes screening and identification of SDH, advocacy and policy change, tailored healthcare interventions, and cultural competence and sensitivity, could serve to improve the quality of life for children with retinoblastoma. The work on understanding the association of social determinants on pediatric eye cancer contributes significantly to the retinoblastoma community by promoting early detection, informing policy, and emphasizing the importance of support services. The insights gained from this research can inform policymakers about the critical need for equitable healthcare policies to ensure that all children, regardless of their socioeconomic background, receive timely and effective care for retinoblastoma. The research also contributes to the medical community’s understanding of how social factors might influence treatment adherence and effectiveness. This knowledge can lead to more personalized treatment approaches that consider the patient’s social context, thereby optimizing treatment plans and improving outcomes. In addition, this research can act as a catalyst for essential collaborations between healthcare providers, researchers, advocacy groups, and policymakers. Such collaborations are essential for addressing the complex challenges faced by the retinoblastoma community and for implementing the changes needed to improve care and support. 

Overall, our retrospective analysis serves as a call to action for the medical community and society to recognize the impact of social variables in the context of retinoblastoma. Next steps for this project would be to engage patient partners and community members in knowledge translation. Following this, we would want to assess perspectives of healthcare providers on, and readiness for, collecting SDH data and integrating insights into care; and uncover patients views on discussing SDH during care, and how they perceive SDH affect their care and outcomes. 

“Cup of Tea” Journal Club December 2023

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, December 19, 8:00 – 9:00 PM ET. Our speakers will be Genevieve McCarthy, retinoblastoma survivor and President of the Canadian Retinoblastoma Society and Margaret Reynolds, pediatric ophthalmologist at St. Louis Children’s Hospital. Together they will be discussing the article, “Eye-related quality of life and activities of daily living in pediatric retinoblastoma patients: a single-center, non-controller, cross-sectional analysis” for which they will write 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.

Event Details

Time: Tuesday, December 19, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Eye-related quality of life in retinoblastoma patients

Meeting Link: https://zoom.us/j/93869626816?pwd=YVA2MHIzNmJwRE5HRW00b1BGM3Vydz09

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If you missed our last “Cup of Tea” event on, “Group Medical Play and Children’s Self-Reported Fear in the Pre-Operative Setting” led by Lindsey Berlett, Morgan Livingstone, and Jocelyn Leworthy, you can watch the recording or listen to the podcast version now.

Patient Experience: Acting as a Cup of Tea Co-Host

Authored by Jillian Purdy

My name is Jillian and as parent of a 3 year old son with retinoblastoma, I am here to share my experience as a ‘Cup of Tea’ co-host.  

My retinoblastoma journey began on December 24, 2019, when my son Samson was diagnosed at 6 months old. We hadn’t heard of retinoblastoma before and I’m sure many of you can relate to the shock and horror of hearing the word ‘tumour’ and ‘cancer’. After the initial period of feeling scared and alone, we started to realize that there was an incredible team at SickKids who would be there with us every step of the way. From ophthalmologists to oncologists and social workers to geneticists, it was overwhelming but also reassuring to know that so many people were dedicated to our son’s care. Although we are back in active treatment after months of remission, we remain hopeful that Samson will one day call himself a survivor.

Samson was also diagnosed with 13q Deletion Syndrome, which means he is missing a piece of the 13^th chromosome, including the RB1 gene that causes retinoblastoma. Because we we’re so engrossed in battling RB, we thought of this news as an answer to why he has cancer rather than a whole new set of life changing challenges. As Samson got older and we moved out of active treatment, we started to fully realize the impact. The reality of this diagnosis for Samson is severe global developmental delay. And because of its rarity and the spectrum of severity, we are left to discover its characteristics as Samson grows. We have a team of paraprofessionals providing early intervention to help Samson reach his full potential. I am happy and proud to say that today he uses about 15 words and is learning more every day. This may not sound like much, but after wondering if he would always be non-verbal, it feels like a miracle.  

I can’t remember exactly when I learned about CRRAB, but I do remember being impressed by how organized, active, and wide-ranging this community is. During the first few months after diagnosis, I just wanted knowledge and CRRAB was a great resource. As we moved out of the initial treatment phase, I wanted to be a more proactive participant in the community. I was inspired by the idea that simply sharing my lived experience could help future families navigate a RB diagnosis, help move research forward, and even influence the direction of research itself. I have attended quarterly meetings, read the newsletters, participated in the annual symposium, and joined a working group however, the most rewarding experience so far has been co-hosting a ‘Cup of Tea’ event and writing a research article summary with a clinician. I was asked to participate by a member of CRRAB and am grateful for this because I’m not sure I would have taken the initiative on my own. I was able to choose a topic and article that I was passionate about and was partnered with one of Samson’s health professionals. Not only were we able to discuss the article as it related to my son specifically, which helped with establishing a deeper understanding, I was also able to build that relationship and connection to my son’s care team. My hope is to continue to be an advocate for 13q deletion as it relates to RB and co-hosting the Cup of Tea event helped me to raise awareness of this topic. There was engagement with the community through questions that were raised about the research and discussion of potential next steps.  

Throughout my limited experience with CRRAB I have learned that patients, parents, survivors, health professionals, researchers and more all have an important place in the CRRAB community.

All of these voices together are what moves RB research forward.  “You can do what I cannot do. I can do what you cannot do. Together we can do great things.” – Mother Teresa. I encourage patient partners to continue to use their unique skills, strengths, and experiences to participate in CRRAB events like the ‘Cup of Tea’ and make a difference for past, present, and future retinoblastoma patients and their families.