Meet Our Global Team
Our international team includes many wonderful people, all of whom play a vital role in building hope for children, families, and survivors around the world living with retinoblastoma and its effects. Here we introduce you to our great international team members. Please visit the Chapter sections to find out more.
Canada
Brenda Gallie
Helen Dimaras PhD
Morgan Livingstone CCLS
Our Canadian chapter was founded initially to help fund care for one child, Rati, when she travelled from Botswana to Toronto for treatment. Fundraising events took place in Toronto, and hosted by wellwishers across the country, to support vital medical care.
Many opportunities to save Rati’s life in Africa were missed, and for every child like Rati who reaches expert care in a developed country, thousands have no chance.
When Rati died in 2006, Brenda Gallie, then Director of the Rb Program in Toronto, travelled to Kenya for one week with our co-founder, Abby White, to seek solutions for other children.
During the week-long visit, they learned about the challenges accessing Rb care from affected families; led a very interactive session on retinoblastoma at the regional referral hospital in Kisumu; and hosted a community awareness event, inviting the general public to learn about Rb and childhood cancer at a free meal.
They returned to Kenya for a month in November 2007, together with child life specialist Morgan Livingstone, who had supported Rati and her family in Canada. Morgan led a pilot program of child life supports and training at Nyanza Provincial Hospital. The valuable connections she made laid the foundations of today’s Kenya Child Life Training Program – a world-leading venture in psychosocial supports for critically ill children in Africa and beyond.
Brenda and Abby visited every major hospital across Kenya (public, mission and private) that treats retinoblastoma. Partnerships across the country grew quickly from that visit, and the Kenya National Retinoblastoma Strategy was officially launched in September 2008. Helen Dimaras also joined the Canadian team in 2008, with a global eye health perspective. Helen is one of the few scientists globally to focus almost exclusively on retinoblastoma.
Together, the KNRbS and WE C Hope have increased awareness, streamlined care, and enhanced family support, raising survival of Rb from 26% in 2008 to 70% today.
WE C Hope Canada is highly research driven, focusing on activities that support evidence-based care and patient engagement in research around the world.
Morgan Livingstone leads child life training for developing countries, based at the Sally Test Pediatric Centre in Eldoret, Kenya. She works with all our chapters to lead child life programming at One Rb World, deliver training to our community, and offer retinoblastoma-specific child life support at other WE C Hope events.
Canada Base, International Focus
WE C Hope Canada works alongside and in collaboration with the Canadian Rb Society, which serves affected families and survivors across Canada; and the Canadian Rb Research Advisory Board (CRRAB), which guides patient-led research.
Visit WE C Hope 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.
Brenda on our blog: DePICT the Cancer Care Journey: Overcome Rarity Through Collaborative Research
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.
Helen on our blog: Investing in Hope: The Quest to Fund Retinoblastoma Research
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.
Morgan believes strongly in educating caregivers, administrators, and the public about supporting children coping with illness, surviving trauma and facing stressful life events. With vast experience with resource-limited child life implementation through work with many international charities and NGO’s, Morgan diligently advocates for the provision of child and family friendly healthcare across the globe.
As an active member of the Evidence-Based Practice Committee at the Child Life Council, Morgan promotes the recognition and incorporation of child life research into clinical practice.
Morgan on our blog: Child Life in Kenya: The Sally Test Child Life Program
United Kingdom
Abby White
Selwyn Lloyd
Marie Lloyd
Daisy’s Eye Cancer Fund UK (now World Eye Cancer Hope UK) was founded when bilateral Rb survivor, Abby White, received an enquiry from one family in Africa. Rati’s cancer had returned 19 months after delayed eye removal surgery, with no hope of cure in her homeland, Botswana. Her family asked simply for information, advice, and prayer.
English Rb survivor, Daisy, had just returned home from treatment in Canada, when her Canadian doctor, Brenda Gallie, offered Rati help. Daisy’s parents gave initial funding to make this possible, and Daisy’s Eye Cancer Fund was established in both England and Canada to support continued fundraising for Rati’s care.
Rati’s Challenge
Abby and Dr. Gallie talked frequently about the challenges of bringing a child to another country for treatment. Logistics, costs, and fundraising make this very difficult, and multiple opportunities to save Rati’s life in Africa were missed.
When Rati died in 2006, Abby and Brenda travelled to Kenya to investigate how they could help tackle the issues that caused her to die. Abby’s father was born in Kenya, and diagnosed with bilateral Rb in Nairobi in 1946; and 25% of sub-Saharan Africa’s ophthalmologists train in Kenya. This was a good place to begin.
During the week-long visit, they learned about the challenges accessing Rb care from affected families; led a very interactive session on retinoblastoma at Kisumu’s regional referral hospital; and hosted a public awareness event, offered with a free community meal.
In November 2007, they returned for a month, together with child life specialist Morgan Livingstone, who had supported Rati and Daisy in Canada. Morgan’s pilot program of child life supports and training laid the foundations of today’s Kenya Child Life Training Program – leading the world in psychosocial supports for critically ill children in Africa and beyond.
Brenda and Abby visited every major hospital (public, mission and private) that treats retinoblastoma. Partnerships grew quickly, and the Kenya National Retinoblastoma Strategy (KNRbS) was officially launched in September 2008.
Together, the KNRbS and WE C Hope have increased awareness, streamlined care, and enhanced family support, raising survival of Rb from 26% in 2008 to 70% today.
We have supported hundreds of families struggling to access care in various ways. These include uninsured patients; families in conflict zones and refugee camps; families seeking help before, during or after international care; and families affected by pandemic travel restrictions.
WE C Hope cannot fund individual patients. We advise and support families, while focusing our limited resources on programs that can make a lasting positive impact for many. We advocate for quality international patient care, and support the growth of specialist Rb programs to meet comprehensive family needs.
Our global community makes greatest progress when we address key parent and survivor priorities together. WE C Hope UK hosted the first One Rb World meeting in October 2012, immediately before the International Society of Paediatric Oncology (SIOP) world congress in London.
One Rb World unites all stakeholders to collaborate for the best possible acute and lifelong care for all. The meeting has grown each year, welcoming more families, survivors, medical professionals, and scientists from around the world.
One Rb World is planned, funded, and hosted by different groups depending on the SIOP congress location. WE C Hope UK provides admin, logistical, website, and promotion support for each event planning team.
UK Base, International Focus
WE C Hope UK works alongside and in collaboration with the Childhood Eye Cancer Trust, which serves affected families and survivors across the UK. CHECT serves the UK retinoblastoma community well, and WE C Hope UK focuses on improving care and cure in less well resourced regions of the world.
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, including nightly cluster headaches, but emotional trauma has been most enduring impact of cancer in early life, 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 Daisy’s Eye Cancer Fund (now 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 Abby received many requests for help from American families and survivors, she 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.
Among various fundraising ventures for WE C Hope, Abby hiked the full length of the Thames from barrier to source in 16 days; trekked across East Africa’s Great Rift Valley twice; completed the Great Scottish Swim; walked over burning coals (three times); and swam three miles along the Jurassic coast from Lulworth Cove to Durdle Door – then clambered heart-in-throat up the temporary cliff steps (which she feels is really where the earned the sponsorship).
Read the full story of how WE C Hope began, evolving From One Child to One Rb World today.
Family is everything to Selwyn. His daughter, Daisy (25), is a courageous young woman who has battled childhood eye cancer (retinoblastoma, Rb) and subsequent effects all her life. Witnessing Daisy’s fight first hand has been an emotional journey, filled with anger, sadness, guilt, and even feelings of loss. Yet, it’s also been a journey of love, joy, and unwavering care.
Selwyn understands the often overwhelming challenges families face, having walked this path with wife Marie for 24 years so far. He believes Rb is a lifelong adventure, not a life sentence, and that there’s immense love, joy, and reward on the way.
Inspired by his family’s journey, Selwyn agreed to chair the UK branch of WE C Hope. He’s still willing to share the family’s personal story to raise awareness for the cause, and connect with others who want to help.
Selwyn hopes his experience may be valuable in setting up the UK team. He has served on a number of boards, chaired the Portsmouth chambers of commerce and started companies in the UK. Previously, Selwyn founded Audazzle, a company that developed accessible video game technology to help Daisy shoot down space invaders just as well as her sighted siblings. This experience highlights his commitment to innovation, inclusion and accessibility.
While his focus remains on family, Selwyn wants to support the UK WE C Hope team’s growth, including a new chairperson. He sees himself as an interim resource, offering guidance and fostering connections with potential supporters.
Marie is the mother of Daisy, Rose, Poppy and Woody. She and husband Selwyn walked the long rocky road of Daisy’s retinoblastoma to blindness.
Inspired by Dr Gallie and Dr Chan’s work, Marie wanted to help other children avoid losing both eyes, or their life, by providing appropriate healthcare opportunities where little exist. Daisy’s Eye Cancer Fund evolved from this desire.
Marie worked as an environmental chemist consultant, lecturer and homeopath when Daisy was diagnosed. After Daisy lost her sight, Marie retrained as a specialist teacher for children and young people with a visual impairment. She is now in management, supporting the strategic development of education for students with vision and hearing impairments in her local authority.
She is a keen advocate of early intervention – both in support for blind children, and diagnosis and treatment of retinoblastoma.
Marie loves spending time with her family and seven cats when she is not working or attending football matches. She enjoys theatre, reading, and walking.
United States
Marissa D. Gonzalez
Lori Baños
Kassady “Kat” Garrison
Rachel Paulos
Clayonia Colbert-Dorsey
Melissa Mills
Somer Stanley
Cat Cox
Elana Kirby
Rita Thorosian-Gardner
Kristen Small
Lisa Hester
After founding Daisy’s Eye Cancer Fund in the UK and Canada, Abby White received many requests for help from American families and survivors. No United States organization offered retinoblastoma (Rb) support or advocacy, so Abby began exploring ways to fill this gap. Daisy’s Eye Cancer Fund USA was founded in 2012 to address family and survivor needs, and encourage action on the obstacles to highly effective care.
In 2015, Daisy’s Eye Cancer Fund rebranded across all chapters to become World Eye Cancer Hope (WE C Hope), reflecting our work on a global level.
Community Support
Today, WE C Hope USA fosters a thriving retinoblastoma support network that includes patients, survivors, families, caretakers and medical professionals through our regional family weekends across the country and our annual Southern California family day. We have created a safe and nurturing environment for those affected by retinoblastoma to connect, share lived experiences and form life-long friendships.
Virtual events have included survivor meet-ups, child life programming and a back-to-school session for parents, focused on practical support and inclusive education planning for children with sight loss.
One Retinoblastoma World
In 2017, WE C Hope USA hosted the 4th One Retinoblastoma World (One Rb World) meeting, and the first National Rb Family and Survivor Day. These wonderful events brought together our global Rb community in Washington D.C., and accelerated the organization’s growth. In October 2024, WE C Hope USA hosted the 7th One Rb World conference in Hawaii, gathering a record 176 in-person attendees from 6 continents. An overwhelming sense of collaboration and connection was felt throughout the three-day conference, and proved that our amazing Rb survivors are also thrivers.
Life-Saving Early Detection
In August 2023, WE C Hope USA President, Marissa D. Gonzalez, spoke about One Rb World at the International Society of Ocular Oncology Africa conference, held in Mombasa, Kenya. Her experience in Africa led WE C Hope USA to fund a donation of 300 Arclight ophthalmoscopes across 5 low- and middle-income countries in Africa and Asia. Together with the Southern California based organization, KnowTheGlow, and The Arclight Project, a triangulated partnership was formed. These donations of the low-cost, high-tech eye screening devices will significantly enhance early detection of retinoblastoma and other blinding eye conditions.
Retinoblastoma For Life
In October 2023, the New York Times featured Marissa in the Opinion Section cover story “It Takes a Lifetime to Survive Childhood Cancer”. This article drew significant attention to retinoblastoma and its life-long impacts, across the USA and internationally, and underscored that a pediatric cancer diagnosis is indeed a life-long journey.
WE C Hope USA has grown thanks to a small group of dedicated people dispersed across the country. Primarily parents and survivors, the team has persisted through many setbacks, including sight loss and second cancers. With broad experience of life with retinoblastoma, the team is well-placed to develop programs that will benefit families and survivors, and advance patient care across America, while also taking a leading role in global Rb advocacy.
Founding Board Member
Marissa D. Gonzalez was diagnosed with bilateral retinoblastoma (Rb) at 17 months, was treated with radiation and cryotherapy, and lost her left eye at 23 months. She continued exams under anesthesia to monitor the tumors until age 12 when she was declared cured.
In 2018, Marissa lost the majority of her remaining vision due to complications from a craniofacial reconstruction. In 2023 Marissa was diagnosed with – and subsequently cured of – melanoma, a common second primary cancer for survivors with the RB1 genetic mutation.
Marissa is a proud graduate of the University of Southern California (USC), where she worked in event management and development for 17 years.
Marissa has planned three One Retinoblastoma World conferences, bringing together our global Rb community to discuss and learn about the latest treatments, research, and survivorship care for retinoblastoma. One Retinoblastoma World was featured in the 2022 Harvard University Press book, Global Perspectives on Ocular Oncology, in a chapter that Marissa co-authored.
Marissa is proud to serve on the steering committee of the National Convergent Science Cancer Consortium supported by the Department of Defense, part of President Joe Biden’s Cancer Moonshot program.
On October 8, 2023, Marissa was featured on the front page of the Sunday Opinion section of The New York Times. The article, It Takes a Lifetime to Survive Childhood Cancer, highlighted the challenges of being a pediatric cancer survivor and a legally blind woman.
Through World Eye Cancer Hope, Marissa attended and spoke at the International Society of Ocular Oncology Conference in Kenya in August 2023.
Marissa believes her challenges as an eye cancer patient and blind adult survivor led her to become an international advocate for pediatric oncology, effecting change here in the United States and around the world.
Founding Board Member
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 is a dedicated itinerant Teacher of Students with Visual Impairments (TVI) and Certified Orientation and Mobility Specialist. She brings many years of experience in the field to children and families in our retinoblastoma community.
Lori on our Blog: 10 Things Parents Want You to Know About Retinoblastoma
A proud member of the USC Trojan family, Kassady “Kat” Garrison holds a Master’s degree in Business Taxation and currently works as a corporate tax associate at KPMG, focusing on clients in the tech, retail, and cruise line industries.
Her journey in tax began in 2017 through the VITA (Volunteer Income Tax Assistance) program, where she helped low-income, elderly, and disabled individuals file their taxes – an experience that sparked a lasting passion. She later became a program coordinator for VITA, overseeing operations and ensuring that more people had access to essential tax services.
Kat’s involvement with WE C Hope began in 2022, first participating in our Family Days, where she had the opportunity to connect directly with families and support their needs. She now feels truly honored to contribute to the organization in a larger role. Giving back has always been close to her heart, and she’s excited to continue making a difference as the organization grows and thrives.
Rachel Paulos is an Audit Associate at KPMG, where she works with some of the world’s largest public companies in the real estate and sports industries. Her interest in accounting began during her undergraduate studies at Whittier College, and she went on to earn her Master of Accounting degree from the University of Southern California in 2023.
Rachel joined the board of World Eye Cancer Hope to make a meaningful impact beyond the corporate world, using her skills to support families navigating unimaginable challenges. She sees giving back as a responsibility and a privilege. Rachel is committed to advancing WE C Hope’s mission and supporting its continued growth, and feels honored to be part of an organization that brings hope and healing to so many.
Clayonia Colbert-Dorsey was born and raised in Maryland, the eldest grandchild of a United States Congressional Gold Medal Recipient and Documented Original Tuskegee Airman. Diagnosed with unilateral retinoblastoma at the age of 2.5 years, she embraced life beyond fear and lives by the words of Ralph Waldo Emerson: “to know that even one life has breathed easier because you have lived . . .this is to have succeeded.”
Known as a transformative writer/global speaker, Clayonia brings passion to purpose. She attended Allegany College of Maryland, earning an Associate Arts Degree in Executive Secretarial Science; and pursued Bachelor’s study in Organizational Management at Nyack College.
A born Servant Leader, she has held positions in federal and state government, academia, and nonprofit/associations. She is a member of the American Society of Association Executives, trustee at White Rock Independent Methodist Episcopal Church, and proud to serve on the World Eye Cancer Hope US Board of Director.
Clayonia on our blog: Ethnography: A New Frontier in Retinoblastoma Research
Mark Billings’ 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, and has served as CFO since 2016.
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.
Mark on our Blog: From CRADLE to Care: Your Photos Can Help Scientists Build an App for Parents to Diagnose Serious Child Eye Disease Early.
Melissa Mills 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.
Melissa on our blog: How Do I Create A Family When I Have An RB1 Mutation?
Somer Stanley is a proud military spouse, mother of two, and passionate advocate for accessibility and inclusivity. Her journey as a parent took a life-changing turn when her daughter, Journey, was diagnosed with bilateral retinoblastoma.
Navigating the complexities of medical treatments, emotional challenges, and the long-term impact of her daughter’s diagnosis deeply shaped Somer’s perspective. This experience fueled her commitment to supporting other families navigating similar challenges, offering guidance, advocacy, and hope.
Professionally, Somer’s advocacy extends into her work as the creator of Nclusive Scan, a patented accessibility solution that bridges communication gaps for Deaf and visually diverse individuals. With over 15 years of experience in accessibility and inclusion, she provides innovative tools, education and solutions, to ensure thriving communities have equitable access to vital resources.
Somer’s dedication to creating inclusive environments aligns seamlessly with WE C Hope’s mission to empower families and survivors affected by childhood eye cancer.
Kat Cox says: “Being the parent of an Rb survivor who rocks a purple sparkly prosthetic eye, my focus is to support and empower those in the Rb community, especially in finding your voice and controlling your narrative. WE C Hope has been one of the silver linings in our journey. Bringing the Rb community closer together through events and fundraising is one of my passions and I am honored to be on the board of WE C Hope to help patients, survivors, parents, siblings, extended family, and beyond. Let’s bring everyone together to empower, find hope, and change the future of Rb!“
Elana Kirby is a dedicated wife and mother of two. When her son was two years old, he was diagnosed with unilateral retinoblastoma in his left eye, which was removed to save his life. Now Elana is an advocate for preventing early childhood blindness and spends her time educating her community about detecting “the glow” in children’s flash photos.
Elana lives with her family in Maine and is excited to be part of the WE C Hope USA team!
Rita Thorosian-Gardner is a bilateral retinoblastoma survivor who was born and raised in California. She was diagnosed with Rb at six weeks old and treated at Children’s Hospital Los Angeles in the 1980s by Dr. A. Linn Murphree, who saved her life.
Rita received her bachelor’s degree in psychology from the University of California, Irvine, and went on to receive a master’s degree in social work from the University of Southern California. She has over 18 years of experience in social work, and currently works as an inpatient social worker for a hospital in Orange County. She strives to support others in the best way possible.
Rita lives in Orange County, California, with her family. She is a dedicated wife and mom. To Rita, family is everything! They have been her backbone through life, always encouraging and supporting her to achieve her goals. She feels so honored and excited to be part of the WE C Hope USA team.
Kristen Small has more than 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 served on the board of WE C Hope as Communications Director for 8 years, and continues to support the organization as a volunteer.
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 was a loving mother to eight children, including Rb warrior Elijah, and a treasured member of the WE C Hope USA Board of Directors since 2017.
Lisa was amazed and encouraged by WE C Hope’s hosting of the One Retinoblastoma World 2017 conference in Washington D.C. She immediately volunteered at the event to receive and read out questions/comments from our 135 virtual participants around the world.
Seeing this amazing community of providers, survivors, and their families grabbed Lisa’s heart, and led her to become more involved with WE C Hope and the wider Rb community. Learning from One Rb World and other WE C Hope training opportunities, she keenly advocated for child life supports, both in her son’s medical care, and for all children. She looked forward to speaking on the subject at One Rb World 2024 in Hawaii, and to bringing her children to the conference to benefit from the child life program.
Lisa wrote of her son’s Rb experience: “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 9 years old (May 2024) with no evidence of disease – still under surveillance and working on some treatment related issues, but overall happy and healthy”.
Lisa died while on her daily morning walk on July 31, 2024. She leaves a huge void in our team, community, and collective heart.
We continue our commitment to advance child life for retinoblastoma across the USA and around the world in Lisa’s memory. We invite you to join us by donating to the Lisa Hester Child Life Memorial Fund.
Lisa on our blog: Ohana: The Beating Heart of One Retinoblastoma World 2024
Lisa on our blog: A Day Well Spent – California Family Day
