Silvia Serolini and her daughter Vicki
For some people, having a loved one with a disease for which there is no cure is the impetus for them to do whatever it takes to find a solution. Some people succeed in starting startups that turn their dreams into reality. But such ventures come with myriad challenges, from convincing investors to provide the necessary funding to building the right team to help make it happen.
Silvia Celorini is the mother of 10-year-old Vicky, who has RDH12 hereditary retinal dystrophy, a condition that leads to significant vision loss later in life. Inspired by a simple promise: “We’ll do everything we can to protect Vicky’s vision,” Silvia and her husband Enrico founded the nonprofit organization Eyes on the Future to bring a cure to people suffering from diseases like Vicky’s as quickly as possible.
She said: “Vicky is character-wise very resilient and incredibly strong, but she is now legally blind. Her vision will only continue to deteriorate as there is currently no cure. Young people with her condition usually become completely blind by their late teens or early twenties. The first six months after the diagnosis were really difficult, but Enrico and I were determined to either wait for this to happen or to try and do something about it.”
In search of a cure
Eyes On The Future was first launched in 2017 as ‘Through Vicky’s Eyes’ as a fundraising and advocacy initiative to find a cure for Vicky and children like her, and will officially become a charity in the UK in 2022. It was incorporated as an organization. Its mission is to raise funds, raise awareness, and mobilize communities around the world to support research into rare diseases, eye diseases, and inherited retinal diseases with a focus on the RDH12 gene.
Serolini worked in the FMCG industry for many years in the field of data innovation analysis, while her husband worked in the financial industry. Both were professions far removed from the world of science and the nonprofit sector. “We were thrown into the world of rare diseases overnight,” she says. “And we started from scratch, reading every single article we could find online.”
The Benefits of Business Insights
The advantage for both of us was that, coming from the commercial world, we were able to apply business thinking and management skills to the problems of the world of rare disease research, which is still developing in terms of business capabilities. And we needed these skill sets because of the challenges of securing funding for rare diseases.
“It was hard at first, and hard to get taken seriously,” says Celorini. “We started with the basics, tapping into our network and doing bake sales to asking family and friends. As we got more sophisticated, we turned to crowdfunding, organised local fundraising events and secured a £300,000 grant from a UK family trust. We then presented at a conference and engaged the head of the FDA’s Ophthalmology Department, becoming a prime example of a patient-led partnership.”
She also made a dramatic career move from retail to pharmaceuticals, becoming Sanofi’s head of innovation and specialty care. Because she wanted to understand the world from the inside. “Rare diseases rarely occur in isolation,” she says. “My daughter’s disease affects thousands of children in the Western world. But overall, 1 in 15 children have a rare disease, and 1 in 15 children have a rare disease. There is no cure for 95% of cases.
Global Alliance
Celorini is CEO and board member of the UK-based Eyes on the Future, as well as coordinating the global RDH12 Alliance, which is made up of sister nonprofits based in the US and Belgium. The group has raised around $5 million in total, invested primarily in supporting academic projects and early stage research into therapeutic areas such as gene therapy.
“The research carried out over the past few years has prepared us to move into clinical trials,” Celorini said. “The challenge now is for the companies working on our disease to raise the necessary funding. I’m sure one day we’ll find a solution, but right now it’s all about getting to the next stage of clinical development.”
She is also determined to take it to the next level and look at partnering directly with industry to develop new models for channeling philanthropic funds into clinical development and innovating from a risk-reward sharing perspective. “We can be a blueprint for many more medical conditions,” she says. “Knowing that we can pave the way for others is very motivating.”
Funding Criteria
Their approach and entrepreneurial journey, as explained by Jacqueline Kosekoff, managing partner at Moria Partners, a private equity firm that identifies, selects, mentors and manages medical services, life sciences and IT companies, explains: It’s very unusual.
She said that while many people are attracted to careers in healthcare and life sciences because of their own or family members’ experience in healthcare, it is less common to see investments from founders who are eager to start a healthcare company but have little or no experience in the field and no prior knowledge of how to structure a business.
“When evaluating an investment, the CEO’s ability is more important than his or her motivation,” says Kosekoff. “The most important investment factors include whether the business is addressing an important problem and the size of the market opportunity; whether the strategy and business plan are well thought out and likely to succeed; whether the business has customers and evidence of both top and bottom line growth; the capability and track record of the management team; and an understanding of the competitive and regulatory environment.”
The next stage of growth
Eyes on the Future is currently run by an all-volunteer team of trustees. To take her vision to the next level, Chris Coe, senior partner in life sciences at global executive search firm Kingsley Gate, encouraged Celorini to consider two key roles.
“First, an experienced chairman can provide guidance and help define the scientific value proposition needed for a future-proof business,” he says. “Second, appointing a chief scientific officer or head of research and development can help attract and leverage the capital needed for a strong growth platform.”
Getting out of the hectic environment of under-funded early-stage companies typically requires a shift in thinking. For example, when building your team, a blended model that includes senior contingent and permanent employees with the flexibility to tackle key strategic challenges is a real asset.
“Once the business structure is more clearly defined and the required roles are clear, it is important to create an organizational design plan that outlines key capabilities and potential resource gaps,” adds Koh. . “It is also helpful to factor in reserves that are realistically aligned to the expected use of capital. And finally, founders should also be prepared to delegate more as the business grows. ”
