In a recent meeting, the luminous dedication of Dr. Laurence Desjardins, Erika Leiman, Vice President Marie Françoise Ray, and President Catherine Bothorel of Rétinostop shone as brightly as their cause: raising awareness about Retinoblastoma (RB), a rare eye cancer affecting children in France. Together with Megan Webber and Helene Dameris from KnowTheGlow, the group delved into Rétinostop’s impactful journey and initiatives. Rétinostop, co-founded in 1994 by Catherine Bothorel and other concerned parents, forged an alliance among parents, patients, and esteemed doctors including Dr. Laurence Desjardins, forming a heartfelt collaboration dedicated to combating RB.
At the core of Rétinostop’s mission lies the fervent drive to raise RB awareness, offering vital emotional and psychological support to families while advocating for early diagnosis. Priority initiatives are focused on supporting clinical and scientific research on retinoblastoma along with being involved the Alliance Mondiale Contre Le Cancer (AMCC) since 2011. This encompasses creating engaging videos, informative posters, and distributing educational materials to illuminate this rare childhood disease. Their unwavering support for the International Society of Ocular Oncology (ISOO) since 2011 echoes their commitment to shared objectives, especially concerning identifying leukocoria and persistent strabismus. Remarkably, Rétinostop’s recent awareness campaign in Paris, centered on clinical signals including leukocoria and strabismus, reached an impressive 64,000 individuals, urging parents to prioritize eye health checks for their children.
The personal connections within Rétinostop deepen their dedication. Catherine Bothorel’s link through her daughter’s diagnosis and Marie-Françoise Ray’s intimate tie to Dr. Desjardins, who diagnosed her son with RB at 7 weeks (now a thriving 24-year-old) and Erika’s daughter with bilateral retinoblastoma diagnosed at birth and now a 27-year old successful book publisher, highlight the significance of their collaboration. While primarily based in overseas and Metropolitan France, Rétinostop extends its reach throughout Europe including Switzerland and the UK all the way to Côte D’Ivoire, leveraging innovative tools like WhatsApp to transcend borders and communicate effectively.
Symbolizing hope, Tino, the cat with an eye reflection, serves as both a teaching tool for doctors and a poignant reminder for parents to prioritize their children’s eye health. Alongside a psychologist, they’ve created “My New Eye,” a booklet supporting discussions on enucleation and eye care routines for families dealing with RB. The breadth of support for Rétinostop is exemplified by pastry chef Christophe Adam’s dedication, donating a portion of éclair sales. His active involvement underscores collective efforts to combat RB.
Meetings at the Curie Institute provide essential support for patients and parents, reflecting Rétinostop’s holistic approach in collaboration with the Ophthalmology department at the Curie Institute headed by the Doctor and Professor Nathalie Cassoux and the Pediatric Department headed by Doctor Daniel Orbach and the Genetics and research and testing and Psychology department. Rétinostop’s commitment to financing research and ensuring accessibility to critical information is unwavering. They are exploring future directions such as prenatal genetic testing and reproductive information. Despite significant initiatives, the need for comprehensive vision screening protocols in France remains, sparking discussions during the meeting.
Partnerships like the one with the Rotary Club in local areas, distributing Tino and Rétinostop flyers to new parents, underscore the weight of collective action. Recognizing the importance of educating medical personnel about the “glow” and RB, Rétinostop aims to engage pediatricians actively in France’s vision checks. Their vision extends nationwide to making young parents aware of potential revealing signs while making available essential resources like the Rétinostop booklet, flier, and Tino, a goal presented to local Congress. It is essential that all young parents check their infant’s eyes from birth and watch out for any signs that could reveal the presence of any potential eye disorders.
With renewed commitment symbolized by their new logo and a promising partnership with KnowTheGlow, Rétinostop’s expansion to Francophone Africa hints at even greater possibilities to spread the word. With the focused dedication of these individuals fighting RB, Rétinostop’s journey continues to illuminate countless lives. Together, they’re fostering positive change, throughout metropolitan France, its overseas territories and the surrounding PanEuropean region. KnowTheGlow looks forward to working together with Rétinostop to achieve more awareness jointly starting with a collaborative campaign to highlight Retinoblastoma in the second week in May 2024!
