Silvia Cerolini, the mother of Vicky, who suffers from RDH12 inherited retinal dystrophy, started the not-for-profit organization Eyes on the Future with her husband, Enrico, to find a treatment for Vicky’s condition. This organization aims to raise funds for research on rare diseases, eye diseases, and inherited retinal diseases, specifically focusing on the gene RDH12. The initial campaign, ‘Through Vicky’s Eyes,’ was launched in 2017 and later officially established as a charity in 2022 to help those affected by similar conditions.
Coming from backgrounds in FMCG and finance, Silvia and Enrico had to quickly adapt to the world of rare diseases when they started working on Eyes on the Future. Their business acumen helped them navigate the challenges of securing funding for rare diseases, starting with basic fundraising activities like bake sales and crowdfunding. Their efforts have paid off, as they have secured a £300,000 grant from a U.K. family trust and organized various fundraising events and conferences to raise awareness and attract support.
Silvia made a career move from retail to pharmaceuticals in order to better understand the world of rare diseases from within. She is now the head of innovation specialty care at Sanofi and has been instrumental in coordinating a global RDH12 Alliance, which includes sister non-profits in the U.S. and Belgium. collectively, the group has raised around $5 million, mainly investing in academic projects and supporting early therapeutic areas. Despite the challenges, Silvia is optimistic about moving into the next phase of clinical development and is determined to partner with industries to innovate and pave the way for others in similar situations.
Jacqueline Kosecoff, managing partner at Moriah Partners, explains that the journey and approach of Silvia and Enrico are quite unusual but inspiring in the healthcare and life sciences sector. She highlights the importance of the competence of the CEO when assessing investments, emphasizing factors like market opportunity, business plan, management team, and competitive and regulatory environment. Moving forward, Eyes on the Future is advised to consider hiring an experienced Chair and a chief scientific officer or head of R&D to enhance growth infrastructure.
Chris Coe, a senior partner at Kingsley Gate, recommends a mixed model for building the team at Eyes on the Future, including flexible senior interims and permanent employees. Developing an organizational design plan outlining key functions and potential resourcing gaps is crucial for growth. Silvia needs to be prepared to delegate more responsibilities as the business expands and focus on articulating the scientific value proposition for a future-ready business. The organization’s vision and mission to find a treatment for RDH12 inherited retinal dystrophy remain at the core of their strategies for continued growth and success.
