Monday November 20, 2023
Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
Funding the Team Behind the Science
Jesse Berry MD, Director of Ocular Oncology, CHLA, USA.
There are multiple types of research. I work on basic and translational research. Basic science research is done in a laboratory. Translational research means you’re applying research findings from the lab to the clinic.
I work on liquid biopsy using the aqueous humor – clear fluid in front of the eye. A biopsy traditionally involves taking a piece of tissue to obtain information about the tumor. In retinoblastoma, we cannot touch the tumor tissue, so we take this fluid instead as a liquid biopsy.
Because this fluid is near the tumor, it has nearly the same information we could obtain from the tumor itself. This allows us to safely – and repeatedly – gain information about how cells in the tissue are behaving.
I study this fluid in the lab. This means I have a space, machines to help me study this small amount of fluid, and many people to help me do the research. This is the basic science part of the research. It is arguably the most expensive, and I spend 10-20% of all my working hours simply writing grants to try to fund this.
Many people don’t understand that while grants pay for the equipment, they frequently won’t pay for the people needed to actually do the research. So we have to work extra hard to get adequate funding.
Our hospital estimates that for every grant dollar received, there’s an additional $1.50 in expenses, which the hospital must cover. Sadly, that means research does not generate money, but rather great cost – even with grants! So a hospital needs to be very dedicated to this mission; spending money to support people doing the research.
The challenge means it’s “easier” to support a clinician than a clinician-scientist. But, to find cures, we need scientists – and we really need clinician-scientists!
Many grants will also not support my time or salary at all as a clinician-scientist. This means they will support the research done, but not my time to do the research. I have to ‘donate’ that time, or find other funding to support my salary for that time.
I have grants ranging between US$25K and US$2.8 million. I remember when I was awarded one of my first grants, for $25k. One of my family members, who is not in medicine, said “WOW, that’s so much money and will hopefully help you and your family as well”. It IS a lot of money and is so helpful. But in the research world it’s a small amount because of the costs associated with running a lab. Also, grants of this level generally cannot help with salary for any people in the lab – it is not a check I can cash and spend as I choose.
Please understand how very expensive it is to do this work. For example, it may cost nearly $3000 to evaluate every single sample of aqueous humor that I want to study. And funding agencies want me to have information on *hundreds* of samples.
This is just the basic research costs. It does not include the associated salary costs for the surgeon who takes the sample, the research coordinator who transfers the sample to the lab and makes sure consent and documents are done, or the laboratory technicians who prepare the samples and load them onto the machine. Once the data is off the machine, other people have to interpret that data (often a bioinformatics specialist) and then look at the impact in patients (usually a biostatistician).
As a team, we then prepare that data for publication, which takes many dozens of hours, and then we use that information to write another grant to fund the next phase of research (which takes longer than dozens of hours)! Preparing an NIH grant can take months or more of work.
For me, funding is a great honor. Each grant means someone is trusting me to do great work – and hopefully improve the lives of patients with retinoblastoma.
I also hold NIH NCI funding, which is so impactful. The NCI directs only 4% of its budget to pediatric cancer research, and they want that funding to go FAR. So they favor more common cancers, like leukemia, over rare cancers like Rb. Their argument is that, dollar for dollar, they will impact more children’s lives. But as you all know, rare cancers then go unresearched and un/underfunded. So funding Rb research is especially important.
The Dilemma, Risk and Reward of Rare Cancer Research Funding.
Helen Dimaras, Director of Global Eye Health Research, Hospital for Sick Children, Toronto, Canada.
I’m a Scientist who studies retinoblastoma from a number of perspectives. I have a PhD in Molecular and Medical Genetics and post-doctoral training in global health and clinical trials. My research lab broadly focuses on how to deliver optimal retinoblastoma care worldwide to improve patient outcomes, with patients as partners in these efforts.
I have no medical training – my entire job is research and teaching (e.g. training graduate students). I don’t treat patients, though I do interact with patient families who take part in clinical research or serve as patient partners on research studies.
A key performance indicator for any scientist is their ability to get funded. This is because when we submit a grant proposal to a funding agency, our ideas, expertise, and past successes are evaluated by other scientists who judge the merit of our proposals. This ‘peer review’ process is at the core of science (though, even this is debatable these days, and could perhaps be the subject of future article).
I’m one of the few (possibly the only) non-physician scientists focused mainly on retinoblastoma. While I’ve led a few research projects in other areas (e.g. pediatric ophthalmology, global health and voluntourism), those have mostly been side projects.
I’ve often ignored career advice to ‘branch out’ into other diseases – the rationale being I’ll have a better chance of getting funded if I drop retinoblastoma and focus on something more common. I think about this every time I receive a grant rejection that technically scores in the fundable range, but isn’t selected by the grant panel.
So why is retinoblastoma research so difficult to fund? Well, sometimes there isn’t much funding to go around. Retinoblastoma research studies compete for funding with other childhood diseases needing research.
Sometimes we miss out because research funders think the results won’t translate beyond retinoblastoma. This bias is ridiculous; discovery of the RB1 gene changed the trajectory for all cancer research and care, and it required the study of the ‘rare’ cancer retinoblastoma! We have proof…maybe we need to scream it louder so people hear.
Maybe our retinoblastoma community has ideas so pioneering that those who judge our proposals don’t recognize their potential, because they aren’t yet there themselves.
I recall during my early scientific career, writing proposals about exploring retinoblastoma genetics in Kenya. Many said cancer was not an important issue for low and middle income countries. How wrong they were!
Fast forward to today: the World Health Organization lists retinoblastoma among six global index childhood cancers, and our colleagues at the University of Nairobi are starting to implement next generation sequencing for retinoblastoma in a novel research study. While both are excellent outcomes, it shouldn’t take decades to convince funders about the importance of this work.
Parents and survivors are at the forefront of great ideas. The retinoblastoma patient community in Canada began partnering in research before it was ‘cool’. This helped our successful grant funding when Canada’s federal funding agency became interested in funding patient partnership in research.
Timing was key – we were able to jump on a funding opportunity in patient oriented research, to develop the “Canadian Retinoblastoma Research Advisory Board (CRRAB)”, a body that more systematically facilitates patient involvement in research. CRRAB jointly identified research priorities that patients want to solve, and we work with patients as members of our research team to try to address them one by one.
Patient partnership is increasingly recognized as essential to producing impactful research results, but many funding agencies are slow to adopt this principle. Doing this type of work also takes lots of time and training, both for the patients/parents doing science for the first time, and for the researchers learning about how to incorporate patient experience as a form of knowledge in their work.
Yet, often in grant budgets, patient engagements aren’t eligible expenses. I’m hopeful that patient partnership becomes a standard part of research, and I do see evidence that things are changing.
Research is expensive. To be honest, I’ll take what I can get to ensure that projects begin and the people in my lab continue to be paid! My smallest grants are C$5000, and my largest, US$600,000. The biggest expense is salaries – grad students, research assistants and coordinators, and technical staff cost money! Not to mention equipment and supplies.
And of course knowledge dissemination costs. If you don’t share your research, how will anyone read it? If you only share it with scientists, how will patients find out about it? Patient-facing research materials, like plain language summaries, engaging websites, social media campaigns, and meetings are essential to sharing results and expanding the research impact.
How do I feel about writing research grants? I wish I didn’t have to apply for them. I spend most of my time writing grants that aren’t funded. It’s demoralizing actually. More scientists are speaking up about this worrying trend of increased time writing grants for little to no return. A study from Australia found an average grant proposal took 34 working days to write, with only 21-25% success rate. There has to be a better way.
Community donations have an enormous impact on research. Sometimes hospitals and research institutes accept donations and can direct these to specific researchers or clinician-scientists in their organization. Some non-profits also collect donations and fund a specific call for retinoblastoma research.
I am deeply grateful to the patient families and other private donors who contribute funds to all kinds of research – particularly retinoblastoma, as it all counts. I also think it is important for donors to understand the power they hold with each donation.
Donations directed to specific research teams may be a biased way to distribute limited funds – particularly if the funding goes to more ‘well known’ researchers or teams. One common example is that parents feel a need to ‘give back’ to the doctor who saved their child’s life or sight. However, this does not necessarily mean the donation is supporting the most impactful science. What about those researchers who study retinoblastoma and do not get to interact with patients?
In contrast, directing donations to an agency with open calls for applications and a peer review process means all types of worthy science – including from those you might not have heard about, like young investigators – are considered for funding. This approach also holds the scientists accountable for reporting their research findings.
Circuitous Funding Path for Retinoblastoma Research to Help Families
Brenda L. Gallie, MD, Retinoblastoma Program, Hospital for Sick Children, Toronto, Canada.
As an Ophthalmology Resident in 1972, I admitted a child who came to SickKids Emergency Department with white reflection in both eyes. A new arrival in Canada, the immigration health exam had diagnosed cataract.
The real diagnosis was bilateral retinoblastoma. In preparing to report to city-wide rounds, I found the 1971 Knudson paper identifying from simple age at diagnosis that two genetic events initiate retinoblastoma, and bilateral patients had that genetic change in all cells.1
This is the chart I made with a typewriter and colored pencils to prepare photographic slides for my talk! This is all still true. RESEARCH has refined the details.
Dr. Gallie’s chart illustrating 1973 knowledge of retinoblastoma genetics.
In my interview for a retinoblastoma research Fellowship in New York, the Institute Head asked, “Why study that rare cancer, it’s the only one that is genetic?” Of course, that was WHY I wanted to study retinoblastoma.
I returned to Canada two years later to retinoblastoma clinical care and research. Funding research had all the challenges described by Helen Dimaras and Jesse Berry.
My 70% research time was first supported as a Research Associate of the Ontario Cancer Treatment and Research Foundation (1977-89), then as a Clinician Scientist in SickKids / Princess Margaret Cancer Centre (1998-present). The retinoblastoma research required applications to any potential funder to support particularly the Graduate students and highly qualified technicians doing the work.
Our results were exciting and productive, showing that when both copies of the RB1 gene (RB1-/-) are damaged in a developing retinal cell, cell division proceeds out of control and cancer forms. The children whose normal cells have one normal RB1 gene and one damaged (RB1+/-) usually have tumors in both eyes, but they may have no tumors, or only one eye affected.2
The RB1 gene was identified in 1986 by the team at Harvard Medical School,3 following Dr. Ted Dryja’s first identification of a DNA fragment missing from a retinoblastoma tumor.4 My lab then focused on clinical application to deliver accurate genetics to retinoblastoma families.5 Financial support still had to be obtained by writing grant applications to national and dedicated philanthropic funders. Families consented to the research on their tumors and blood.
The Ontario committee in charge of rationalizing funding for health care informed us that a new genetic test would be considered in five years!
With very dedicated lab leaders, we formed a genetic test company (Solutions by Sequence / Impact Genetics) that developed technical and intellectual precision in clinical RB1 analysis.6 Since this was no longer research, a major effort by families and citizens ultimately achieved financial support to deploy clinical testing with lab certification.
In 1985, we recognized that retinoblastoma tumors from eyes removed for patient care had additional genetic changes in many other genes. PhD students Squires,7 Dimaras,8 and Corson9 found several regions altered in 70% of these tumors, especially extra copies of chromosome 6p.
In 2017, Dr. Berry’s team showed that small fragments of cell-free DNA (cfDNA) shed from retinoblastoma tumor could be found in the otherwise normal fluid behind the cornea of the eye.10 The tumor’s genetic signals could be accurately read from this accessible fluid. Their work also suggested that if extra copies of chromosome 6p were present, current Standard of Care treatments would be unlikely to safely save the eye.11
Dr. Berry’s group is collaborating around the world to establish accurate clinical testing in support of optimized care for retinoblastoma families. While research dollars must be raised to pay for this work, clinical care costs will depend on each country’s rules.
We know now that every cancer is a genetic disease, and some genetic changes greatly increase cancer risk in a family. But retinoblastoma still leads the way: only retinoblastoma adds H (heritable) to the TNM (Tumor, Node, Metastasis) cancer staging system.12
The novel ideas come from patients and clinicians seeking solutions for the patients. The innovation requires funded research to prove its safety and value to patients – easily obtained if pharmaceutical companies can see that the innovation will turn a profit.
Excellent retinoblastoma research shows the human and health value of the innovation, but rare diseases have a hard time getting the attention of health care funders.
- Knudson, A. G. Mutation and cancer: statistical study of retinoblastoma. Proceedings Of The National Academy Of Sciences Of The United States Of America. 68, 820-823 (1971).
- Knight, L. A., Gardner, H. A. & Gallie, B. L. Segregation of chromosome 13 in retinoblastoma. Lancet 1, 989 (1978).
- Friend, S. H. et al. A human DNA segment with properties of the gene that predisposes to retinoblastoma and osteosarcoma. Nature 323, 643-646 (1986).
- Dryja, T. P., Rapaport, J. M., Joyce, J. M. & Petersen, R. A. Molecular detection of deletions involving band q14 of chromosome 13 in retinoblastomas. Proceedings Of The National Academy Of Sciences Of The United States Of America. 83, 7391-7394 (1986).
- Dunn, J. M., Phillips, R. A., Becker, A. J. & Gallie, B. L. Identification of germline and somatic mutations affecting the retinoblastoma gene. Science 241, 1797-1800. (1988).
- Richter, S. et al. Sensitive and efficient detection of RB1 gene mutations enhances care for families with retinoblastoma. Am J Hum Genet 72, 253-269 (2003).
- Squire, J., Gallie, B. L. & Phillips, R. A. A detailed analysis of chromosomal changes in heritable and non-heritable retinoblastoma. Hum Genet 70, 291-301 (1985).
- Dimaras, H. et al. Loss of RB1 induces non-proliferative retinoma: increasing genomic instability correlates with progression to retinoblastoma. Hum Mol Genet 17, 1363-1372, doi:10.1093/hmg/ddn024 (2008).
- Corson, T. W. & Gallie, B. L. One hit, two hits, three hits, more? Genomic changes in the development of retinoblastoma. Genes Chromosomes Cancer 46, 617-634 (2007).
- Berry, J. L. et al. Potential of Aqueous Humor as a Surrogate Tumor Biopsy for Retinoblastoma. JAMA ophthalmology 135, 1221-1230, doi:10.1001/jamaophthalmol.2017.4097 (2017).
- Berry, J. L. et al. Genomic cfDNA Analysis of Aqueous Humor in Retinoblastoma Predicts Eye Salvage: The Surrogate Tumor Biopsy for Retinoblastoma. Mol Cancer Res 16, 1701-1712, doi:10.1158/1541-7786.MCR-18-0369 (2018).
- Mallipatna, A. et al. in AJCC Cancer Staging Manual Vol. 8th Edition (eds M. B. Amin, S. B. Edge, & F. L. Greene) Ch. 68, 819-831 (Springer, 2017).
Two young Rb survivor friends host a fundraising tea party.
CHECT: Helping the Retinoblastoma Community Fund Rb Research
Petra Maxwell, Childhood Eye Cancer Trust.
The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma, a rare form of eye cancer. We:
- Provide support and information to families and individuals.
- Fund research.
- Raise awareness among health professionals and the public.
- Influence policy to improve services for patients.
Research has always been central to the charity’s aims: indeed CHECT was originally formed through the merger of a parents support group and a retinoblastoma research fund.
Today, funding world-class research into retinoblastoma is among the key aims of the Childhood Eye Cancer Trust. We fund projects that will:
- Improve our understanding of retinoblastoma, including the patterns of disease.
- Develop kinder effective treatments, with fewer side effects, that preserve more vision.
- Reduce the negative impact on all those affected.
While CHECT accepts research applications exploring the whole field of retinoblastoma research, our members have identified particular areas of psychosocial research that are important to them. We give further detail of these areas in each annual grant invitation.
Any application must fulfil the guidelines of the CHECT Research Strategy, and it is expected that the majority of research we fund will have the potential to demonstrate benefit to those affected by Rb in the UK within the short to medium term – normally considered to be five to ten years from the grant end date.
CHECT trustees are ultimately responsible for the charity’s research strategy and grant awarding, and a CHECT Scientific Advisory Committee (SAC) assists the trustees in these responsibilities. The SAC includes experts from a range of areas linked to retinoblastoma (ophthalmology, genetics, psychology, epidemiology etc.); and lay members with lived experience of the condition – either directly or as parents of affected children.
In the usual process for making awards:
- The call for applications goes out in late March / early April.
- The SAC carries out a triage process at their summer meeting.
- The charity will seek two external reviews for each shortlisted project.
- These reviews are discussed at the autumn SAC meeting.
- Recommendations are made to the CHECT Board of Trustees, based on the quality of the applications and the reviews.
- The Trustees make the final funding decision in late November / early December.
Most of our research funding is through donations, and we owe a huge debt of gratitude to all our supporters for their tireless work raising money for CHECT.
We have partnered with Fight for Sight on a number of occasions through their Joint Small Grants award scheme – a great opportunity for a small charity like CHECT. Additional funding in recent years has come through the Medical Research Council, and Trusts such as the Greendale Foundation and Clive Richards Foundation. Over time, this has enabled CHECT to remain a small but important funder of retinoblastoma research. We know this work is hugely important to our members, and we are proud of our achievements in this area.
Just some of the benefits to families affected by Rb, made possible by CHECT-funded research include:
- Increased knowledge of the RB1 gene and mutations that can cause Rb, creating the possibility of genetic screening for affected families.
- Development of new technologies to improve the sensitivity of current genetic testing methods.
- Creation of the first rare disease registry of its kind in the UK, leading the way for the establishment of similar registries for other rare diseases across the NHS.
Current projects underway include:
- Lab research aiming to develop more targeted treatments that preserve more sight.
- Using epidemiological records to improve the diagnosis and treatment of second cancers in people with heritable Rb.
- Developing a psycho-educational tool to help teens and young adults with their transition to adulthood.
CHECT is a member of the Association of Medical Research charities.
You Can Support CHECT Research
CHECT research funding includes awareness and early detection work. Early diagnosis is vital to save life, increase potential to save sight, and reduce the intensity of treatment. Throughout 2024, WE C Hope will focus on early diagnosis as the foundation of effective Rb care.
The Foresight Fund: A New Beacon of Hope for Retinoblastoma Research
Beth and Graham Shepherd, The Foresight Fund.
In 2017, our daughter, Bernadette, was diagnosed with retinoblastoma on her second day in this world. We knew to look for eye cancer because her father was diagnosed with it in 1984 at 13 months old. A genetic test 30 years later confirmed our suspicion that his case of retinoblastoma was hereditary.
Fast forward to today, and Bernadette is 6 years old, obsessed with mermaids, and cancer free. We are grateful – both for the incredible care she has received and for the foresight that genetic test gave our family.
Being married to a retinoblastoma survivor and a parent to a retinoblastoma survivor, here is what haunts me:
- Kids with hereditary retinoblastoma are genetically predisposed to second cancers such as pineal gland tumors, osteosarcomas, and melanoma.
- Research shows 33% of them will experience a second cancer.
- Children of hereditary carriers also have a 50% chance of inheriting this cancer syndrome. If they do, they have more than 90% chance of developing eye cancer.
In our family, we’ve already experienced childhood cancer in two generations – and we know it’s likely to keep coming generation after generation.
In 2022, a group of families facing this tough truth came together to raise funding for retinoblastoma research. Through research, we can start the fight for our next retinoblastoma warriors now – years before they are even born.
In collaboration with Alex’s Lemonade Stand Foundation (ALSF), we established a named fund that honors kids with retinoblastoma, their families, and survivors, and builds hope for the future: The Foresight Fund for Retinoblastoma Research. ALSF will direct donations raised for this fund to research on retinoblastoma, specifically:
- Innovative approaches to preventing and treating retinoblastoma tumors.
- Retinoblastoma genetics.
- Retinoblastoma predisposition.
James at age 2, first generation retinoblastoma warrior.
Nate at age 7, third generation retinoblastoma warrior.
Partnership with Alex’s Lemonade Stand Foundation
By operating as a named fund within ALSF, retinoblastoma families, survivors, and supporters from all over the world can come together to fundraise for research. Working through ALSF gives us access to a respected scientific advisory board, a large network of pediatric cancer researchers, fundraising tools, and a team that handles all the required administrative work of operating a non-profit and awarding grants.
Fundraising families can take part in ALSF large-scale events, such as Lemonade Days and The Million Mile, or host their own unique events with proceeds going to The Foresight Fund for Retinoblastoma Research. We are inspired by examples like the families of The CORD Fund, which has driven more than 1.4M for spinal cord tumor research.
Not yet two years old, we have already raised over US$100,000 for retinoblastoma research. ALSF recently funded two new retinoblastoma research studies, both partially funded by the money raised through The Foresight Fund for Retinoblastoma Research:
- Mechanisms to Redirect Tumor Associated Macrophages to Target Retinoblastoma Cells
- Identification of Aberrantly Methylated Differentially Expressed Genes to Distinguish High- vs. Low-Risk Retinoblastoma
One of our daughter’s doctors recently reminded us that research can take years. We said, “We know, and we expect we’ll still be here, fighting retinoblastoma with the generations to come.”
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About the Authors
Jesse L. Berry, MD is Vice Chair for Academic Affairs for the Department of Surgery, and Director of Ocular Oncology, at USC and the Vision Center, CHLA. She is Associate Professor of Ophthalmology, Clinical Scholar at USC, and currently holds the CHLA A. Linn Murphree, MD Chair in Retinoblastoma, and the USC Berle & Lucy Adams Chair in Cancer Research.
As a physician-scientist, Dr. Berry treats patients with retinoblastoma and other ocular tumors, and studies outcomes for patients. She was awarded a K08 in 2018 and R01 in 2023 from the National Cancer Institute of the National Institute of Health to further study the aqueous as a liquid biopsy for retinoblastoma.
Dr. Berry is Vice President for the International Society of Ocular Oncology, and was conference chair for the 2019 biennial ISOO meeting in Los Angeles. She advocates for mentorship and opportunities for young ophthalmologists; she is a member of the Young Ophthalmologist committee through the American Academy of Ophthalmology and co-leads the committee for young ophthalmic oncologists and pathologists (YOOPs). She is active within the Women in Ophthalmology organization and founded WOO, Women in Ocular Oncology.
Dr. Helen Dimaras is the Director of Global Eye Health Research in the Department of Ophthalmology & Vision Sciences at The Hospital for Sick Children, and Scientist in the Child Health Evaluative Sciences program and Centre for Global Child Health in the SickKids Research Institute. She is Associate Professor at the University of Toronto
Dr. Dimaras completed a PhD in Molecular & Medical Genetics and post-doctoral training in clinical trials and global health. Her work contributed to the understanding of the molecular genetic development of retinoblastoma. She leads a research program that lies at the intersection of global health, cancer genetics and patient engagement. Her work focuses on how to deliver optimal retinoblastoma care worldwide and improve patient outcomes, with patients as partners in these efforts.
Dr. Dimaras is featured by the Canadian Society for International Health on the Canadian Women in Global Health List.
Brenda L. Gallie, MD, FRCS(C), CM, OOnt, works with the Retinoblastoma Program in the Department of Ophthalmology and Vision Science at the Hospital for Sick Children (SickKids) in Toronto, Canada. She is Professor in the Departments of Ophthalmology, Medical Biophysics and Molecular Genetics at the University of Toronto; and Associate Scientist at the TECHNA Institute, University Health Network.
Brenda’s research and clinical practice is focused on retinoblastoma. Her pioneering work has contributed to fundamental understanding of cancer development, and provided affordable genetic tests that enhance patient care. She has fully integrated science into patient care, and looked globally to achieve an evidence base for care and equal access to care. Through Point-of-care clinical data with outcomes on all patients, and secure Internet access, the stage is set for a global learning health system, iteratively advancing care based on evidence from the bedside, everywhere.
Read Dr. Gallie’s blog article: DePICT the Cancer Care Journey, Overcome Rarity Through Collaborative Research
Beth and Graham Shepherd live in Chicago with their 6-year-old daughter, Bernadette. As a family, they started fundraising for retinoblastoma research with Alex’s Lemonade Stand Foundation in 2022. Their hope is to bring together members of the RB community who want to have a direct impact on the future of treatment, diagnosis, and prevention of retinoblastoma.