Silvia Cerolini, the mother of 10-year-old Vicky, who is affected by RDH12 inherited retinal dystrophy, started the Eyes on the Future organization with a simple promise to save her daughter’s sight. Vicky’s condition leads to significant vision loss later in life, with most individuals being fully blind by their late teens or early 20s due to the lack of treatment available. Cerolini and her husband, both from non-scientific backgrounds, launched the organization in 2017 initially as a fundraising campaign, but it was officially incorporated as a charity in the U.K. in 2022.
Having come from careers in FMCG and finance, Cerolini and her husband applied their business acumen and managerial skills to the world of rare disease research to secure funding for their cause. They started with basic fundraising strategies like bake sales and family contributions but eventually expanded to crowdfunding, grant applications, and partnerships with influential figures in the medical field. Their efforts culminated in the establishment of Eyes on the Future as a best-in-class example of a patient-driven partnership, raising around $5 million collectively with sister non-profits in the U.S. and Belgium.
As the CEO and trustee of Eyes on the Future, Cerolini coordinates a global RDH12 Alliance to support research and advocacy efforts for individuals with the RDH12 gene mutation. With the organization’s success in funding academic projects and early therapeutic developments, they are now ready to move towards clinical trials. Cerolini is confident that a solution will be found in the future, but the challenge lies in securing the necessary funding for the next phase of clinical development.
Cerolini’s unique approach and entrepreneurial journey have attracted attention from industry experts like Jacqueline Kosecoff, who emphasizes the importance of the CEO’s competence when assessing investments. While it is uncommon for founders without prior experience in the healthcare sector to create successful healthcare companies, Cerolini’s dedication to addressing a crucial problem and her strategic business approach have garnered interest from investors. Moving forward, Cerolini aims to partner with industry leaders to develop new funding models and pave the way for innovative solutions in medical research.
To support the growth of Eyes on the Future, Chris Coe, a senior partner at Kingsley Gate, recommends key leadership appointments to guide the organization towards a future-ready business structure. An experienced Chair and a chief scientific officer or head of R&D would help Cerolini articulate the scientific value proposition and attract the capital needed for growth. As the organization transitions from an early-stage startup to a more structured business, Cerolini will need to delegate responsibilities, develop an organizational design plan, and secure realistic reserves aligned with their projected capital usage.
In conclusion, Silvia Cerolini’s journey to establish Eyes on the Future as a leading advocate for rare diseases and inherited retinal dystrophy demonstrates the power of determination, business acumen, and strategic partnerships in driving medical innovation. With a global alliance, a focus on fundraising, and a commitment to finding a solution for her daughter’s condition, Cerolini is poised to make a lasting impact in the rare disease research landscape and inspire others to pursue breakthrough solutions for challenging medical conditions.
