WE C HOPE - Key Persons
Abby's father was diagnosed with bilateral retinoblastoma in Kenya in 1946, and treated in England. Abby was also born with caner in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy received as a baby. Radiotherapy has caused other late effects, but the emotional trauma has been most enduring, including PTSD, complex grief, survivor guilt, and ravaged family dynamics.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child in Africa and the desire to help many like her in developing countries.
When she received many requests for help from American families and survivors, Abby co-founded the US chapter to help advance care and support across the country.
As well as supporting individual families and survivors worldwide, maintaining our website, and a host of unseen office work, Abby uses her lived experience to advocate for targeted research and better care for our global Rb community.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks with her guide dog, Ritzie.
Job Titles:
- Medical Director
- Medical Director ( Canada )
Brenda's research and clinical practice is focused uniquely on retinoblastoma. She is a professor in the University of Toronto Departments of Medical Biophysics, Molecular Genetics and Ophthalmology, Head of Health Research Informatics at the Techna Institute, University Health Network, and Director of the Retinoblastoma Program at the Hospital for Sick Children, Toronto, Canada. She co-founded Daisy's Eye Cancer Fund (now World Eye Cancer Hope) to help step up action for children around the world.
Her pioneering work has contributed to fundamental understanding of cancer development, and provided affordable genetic tests that enhance patient care. The Retinoblastoma Program has incorporated science into patient care, and looked globally to achieve an evidence base for care, everywhere. Through Point-of-care clinical data with outcomes on all patients with secure Internet access, the stage is set for a global learning health system, iteratively advancing care based on evidence from the bedside, everywhere.
Job Titles:
- Assistant Professor
- Scientific Advisor
- Scientific Advisor ( Canada )
Dr. Helen Dimaras is an Assistant Professor in the Department of Ophthalmology & Vision Sciences, Faculty of Medicine, and Division of Clinical Public Health, Dalla Lana School of Public Health, at the University of Toronto; Honorary Lecturer in the Department of Human Pathology at the University of Nairobi; and Adjunct Scientist in the Department of Ophthalmology & Vision Sciences at The Hospital for Sick Children. She has a PhD in Molecular & Medical Genetics, and completed post-doctoral training in clinical trials and global health.
Dr. Dimaras' research spans the disciplines of global health, cancer genetics and clinical science. Her studies have contributed to the understanding of the molecular genetic development of retinoblastoma. She is currently studying approaches to reduce the global retinoblastoma survival gap between developed and developing countries. Key initiatives include establishment of a centralized digital cancer pathology laboratory in Nairobi; design of comprehensive cancer genetics services to meet the needs of low-resource settings; and development of a global retinoblastoma map, One Retinoblastoma World (www.1rbw.org), to track patients and treatment resources worldwide.
Job Titles:
- Director of Communications
Kristen has 15 years of experience in communications and graphic design, incorporating change management techniques. Throughout her career, she has worked with a variety of organizations - from small companies to large corporations and non-profits. Her motto over the years has become "I'm here to help!"
In Kindergarten, Kristen met her best-friend-for-life, Marissa Gonzales. She is Marissa's go-to driver for surgeries, on-point menu reader in dark restaurants, and blind-side detector. Throughout their friendship, she has witnessed first-hand the effects of retinoblastoma on patients and family. As a result, she has become a passionate supporter of improving quality of life and medical care for everyone impacted by Rb.
Kristen is an avid reader, a DIYer/crafter, and enjoys vacationing anywhere there is water ("…a pond, a pool, a lake, a sea…I'm not picky"). She lives in Southern California with her husband, dog, and three cats.
Lisa Hester is mom to eight children, including Rb warrior Elijah. Elijah was diagnosed at 7 weeks with bilateral retinoblastoma and had his right eye enucleated. He has had several treatments for his remaining eye including laser and IAC. He is now 6 years old (May 2021) with no evidence of disease - still under surveillance and working on some treatment related issues, but overall happy and healthy.
Lisa was amazed and encouraged by WE C Hope's hosting of the One Retinoblastoma World 2017 conference in Washington D.C. Seeing this amazing community of providers, survivors, and their families grabbed her heart and led her to become more involved with WE C Hope and the wider Rb community.
Lori Baños lives in Iowa with her husband, Juan. She is a founding and active board member of World Eye Cancer Hope and is the parent of an adult survivor of bilateral Retinoblastoma. On October 24, 2010, she created the Facebook group, Rb Moms, a place of support for mothers of children with retinoblastoma.
Lori has 13 years of experience as an itinerant Teacher of Students with Visual Impairments (TVI) and Certified Orientation and Mobility Specialist.
Job Titles:
- President
- Board President ( USA )
Marissa's mother noticed a reflection in her left eye at nine months. The local pediatrician dismissed her concerns, but her persistence led to a bi-lateral retinoblastoma diagnosis by a pediatric ophthalmologist when marissa was seventeen months. After one month of daily radiation, along with cryotherapy, marissa's left eye was removed at 23 months. She endured five years of treatment to her right eye, and an additional five years of exams under anesthesia until at age twelve she was declared cured.
Job Titles:
- Chartered Accountant
- Chief Financial Officer
Mark's wife, Katherine, is a survivor of bilateral retinoblastoma and a related second primary cancer.
"I think our strength is measured by how we overcome challenges. When Katherine was diagnosed and underwent a year of treatment for osteosarcoma just 6 months after our wedding (having been cancer-free for 26 years), it was certainly a challenge, but one we faced with the right mind-set to overcome it".
Their daughter, Lucia, was born in 2015 with tumors in both eyes, and continues to undergo treatment. Mark decided to use his family's experience and his professional knowledge of the ‘business of healthcare, to help others. He joined the WE C Hope board in October 2015.
Mark is a Chartered Accountant, with over 10 years of experience at a "Big Four" accounting firm. He joined Pine Hill Group in 2014, and provides merger and acquisition advice to corporations and private equity firms specialized in the healthcare industry.
Originally from the United Kingdom, Mark has lived in the Philadelphia area since 2003. He enjoys travelling and working out, but spends most of his spare time playing with his two young children and juggling housework as he and his wife both pursue their professional careers.
Melissa is a bilateral retinoblastoma survivor and was treated in the 1970‘s at Massachusetts Eye and Ear in Boston, MA. She is now a part-time prenatal genetic counselor at Stanford Children's - Lucile Packard Children's Hospital.
She has three degrees from Stanford University, a B.S. and an M.S. in Earth Systems, and an MS from the Medical School in Genetic Counseling.
Melissa lives in the California Bay Area with her husband, 10 year old identical twins, and rescue dog, Derby. She is passionate about helping people understand genetic information and protecting the Earth. In her free time, she is the President of the Mid-Peninsula Parents of Multiples Non-profit, and Board Secretary for the environmental non-profit Oil Change International.
Job Titles:
- Certified Infant Massage Instructor
- Child Life Director
- Member of the Evidence - Based Practice Committee at the Child Life Council
As a Certified Child Life Specialist and Certified Infant Massage Instructor, Morgan is an expert in child development. She is passionate about promoting effective coping through play, preparation, education, and creative self-expression activities.
Morgan has extensive experience with young patients with retinoblastoma, providing emotional support for children and families, encouraging optimum development of children facing illness, trauma or challenging medical experiences. Understanding that a child's wellbeing depends on family support, she also supports parents, siblings and caregivers.
Sarah "Sassy" Outwater is a bilateral retinoblastoma survivor. She lost her sight in both eyes before the age of four and has survived secondary brain tumors from the Retinoblastoma.
She is passionate about family support structures and medical research centered on understanding how to cope with the aftermath of retinoblastoma. Her main focus is survivorship advocacy, understanding RB genetic research and treatment break-throughs, follow-up care and developing a dialogue between patients and the medical community about living with and beyond retinoblastoma.
Sarah works in the music industry and in designing accessible products and services for companies working with disabled individuals. She brings technical, disability advocacy, financial management and public relations expertise to the WE C Hope USA board.
She lives in Cambridge Massachusetts, and when not fighting cancer in herself or others, enjoys writing, sailing, teas and chocolate, Yoga and advocating for persons with disabilities. When there's enough snow, she's also an avid downhill skier and snowball thrower extraordinaire.
Sarah "Sassy" Outwater is a bilateral retinoblastoma survivor. She lost her sight in both eyes before the age of four and has survived secondary brain tumors from the Retinoblastoma.
She is passionate about family support structures and medical research centered on understanding how to cope with the aftermath of retinoblastoma. Her main focus is survivorship advocacy, understanding RB genetic research and treatment break-throughs, follow-up care and developing a dialogue between patients and the medical community about living with and beyond retinoblastoma.
Sarah works in the music industry and in designing accessible products and services for companies working with disabled individuals. She brings technical, disability advocacy, financial management and public relations expertise to the WE C Hope USA board.
She lives in Cambridge Massachusetts, and when not fighting cancer in herself or others, enjoys writing, sailing, teas and chocolate, Yoga and advocating for persons with disabilities. When there's enough snow, she's also an avid downhill skier and snowball thrower extraordinaire.