PATIENTS' DATA POWERING PROGRESS

Frost Brings Operational Expertise to RARE-X Board as Organization Scales up

Simon Frost, the newest addition to the RARE-X board of directors, describes himself as an “operations guy.”

As CEO of the Tiber Capital Group, a company that invests in single-family homes and aggregates them into big property portfolios, Frost has learned to handle many moving parts at once. Though his companies have purchased about 10,000 homes over the past ten years, each asset is unique in terms of its age, location, and type of construction and can represent a renovation project, construction project, or property that is being leased.

When he found himself thrust into the world of rare disease after his daughter Anabelle, 5, was diagnosed with the rare neurologic disorder alternating hemiplegia of childhood, he found himself taking a similar approach to one he used in his work.

“What I like to do in my business is just break things down into simple components. That’s what I did with my daughter’s rare disease,” he said. “That’s my strength in business—understanding complex problems, getting to the root of them, and trying to create a clear game plan. That’s what I try to do on a daily basis.”

When he brought his analytic approach to the world of rare disease, he identified seven areas where he wanted to help drive improvements. Three of those areas—the diagnosis and identification of targets for rare disease therapies; gathering usable clinical data into a centralized and systematized open-source database; and enabling artificial intelligence, machine learning, and big data analytics—he saw that RARE-X was addressing.

“He’s a father who is laser-focused on helping find treatments for his daughter’s disease. He’s a 100 percent get-it-done guy and he’s very mindful about his approach to tackling these big challenges,” said Nicole Boice, co-founder and executive director of RARE-X. “He’s that problem solver who sees the big vision, but takes pride in developing the building blocks needed to get the work done in support of the vision. He will provide tremendous value to RARE-X during this time of growth.”

Before joining Tiber Capital Group, Frost served as the chief investment officer of Greencourt Capital, a public company with approximately $1 billion in real estate assets. Prior to that, Frost was president and COO of Key Properties. He was also the co-founder of The American Home, one of the largest single-family rental aggregators in the United States.

He holds bachelor’s and master’s degrees in economics from Cambridge University in England, and a bachelor’s degree in finance from the University of South Africa. Simon serves as director of both Cure AHC and Hope for Annabel, charities dedicated to finding therapies for alternating hemiplegia of childhood.

He first became aware of RARE-X through preparing for his appointment to the National Center for Advancing Translational Sciences’ (NCATS) Cures Acceleration Network Review Board at the National Institutes of Health (NIH). He learned about the organization and its goals from various people involved in its development. He said it rang true with his vision for change and supported some of the areas of improvements he has been trying to work on.

“Federated data is the right first step. What I would like to push hard is the idea that the RARE-X federated data sharing platform could be a centralized public good, something that is funded by governments and accessible by everybody. It seems like it’s naturally something that everybody can use as long as we’ve de-identified the data,” he said. “That way, people like my daughter can benefit from this and benefit from it quickly, not just at the diagnosis stage, but on the path to treatment.”

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