Our Founders
In 2017, after their daughter Annabel was diagnosed with AHC at age two, Nina and Simon Frost founded a non-profit called Hope for Annabel and set out on a mission to develop therapeutics for her ultra-rare condition.
In the process, they uncovered a system in crisis. Over 10,000 rare genetic disorders affect hundreds of millions of patients worldwide, many of them children. Virtually all rare conditions lack treatments. The Frosts saw how each rare disease community was forced to “reinvent the wheel” to launch a research program from scratch. Fragmentation, inefficiency, and redundancies were stifling progress, delaying the development of critical therapeutics for patients in need.
The Frosts spent years working to revitalize AHC research around a strategic plan, prioritizing patient needs and therapeutic development. This work quickly revealed broader relevance, inspiring the Frosts to think beyond AHC.
Leveraging their business expertise and Simon’s experience in scaling complex systems, they recognized an opportunity to take on one of medicine’s greatest challenges: accelerating therapeutics development for rare disease patients across multiple conditions at scale.
Hope for Annabel was renamed RARE Hope in 2024.
Nina Frost
Nina leads an international research program for Alternating Hemiplegia of Childhood (AHC), uniting multiple AHC patient organizations around the world to drive progress for this ultra-rare condition.
She has spearheaded the design, centralization, and management of a strategic portfolio of therapy-driven research on behalf of the AHC patient community. Nina plays a pivotal role in shaping the direction of AHC research, identifying critical knowledge gaps and strategically expanding the research portfolio to integrate new discoveries.
Nina takes a hands-on approach to project management, treating grants for scientific studies as strategic investments. She works closely with researchers to cultivate these studies while safeguarding the foundation’s research investments. Through real-time support, strategic guidance, and patient-centric input, she ensures projects stay aligned with objectives and deliver clinically-meaningful results.
In collaborations with scientists and industry researchers, Nina champions a "patients-as-partners" model to develop and execute innovative, patient-centric studies. She has led novel initiatives to investigate the priorities and the burden of symptoms of the AHC population, enabling her to represent patients with authority and precision.
Nina also led Hope for Annabel’s successful grant application for the $2 million Chan Zuckerberg Initiative award in 2022.
Nina’s prior professional experience was in management consulting. Nina and Simon met at the University of Cambridge, where they were graduate students together. Nina earned an MPhil in History from the University of Cambridge.
Today, Nina dedicates herself full-time to advancing research for AHC and to driving impactful change in the rare disease space.
Simon Frost
Simon’s vision for addressing rare diseases at scale is a product of his extensive career in large-scale single-family real estate.
Simon has led several companies specializing in the acquisition, renovation, leasing, aggregation, securitization, and management of single-family homes dispersed across a range of states. When Simon launched his business in 2011, industry skeptics doubted the feasibility of managing large numbers of scattered-site assets. Defying expectations, his companies have since acquired over 19,000 homes and deployed more than $5 billion in capital. Simon was a trailblazer in scaling the single-family real estate industry, leveraging systemization, centralization, standardization, and process optimization to achieve success.
Simon brings this expertise to the rare disease space, focusing on creating scalable, efficient systems to advance a platform approach for all rare diseases.
Simon is a recognized leader in the rare disease advocacy community. He has delivered keynote talks at major conferences and international gatherings, sharing his expertise and vision. He has led high-profile alliances and lobbying efforts for therapeutic advances through ARPA-H and GACHA. His work is focused on the development of centralized and federated data repositories of genotype, phenotype, and real-world data to enable AI and machine learning analytics. Simon is also the Patient Principal Investigator on the prestigious Chan Zuckerberg Initiative PPC grant.
He holds a bachelor’s degree and a master’s degree in Economics from the University of Cambridge in England, as well as a bachelor’s degree in Finance from the University of South Africa. Simon serves on the boards of the Cures Acceleration Network Review Board at the NIH, RARE-X, Global Genes, IRDiRC, Uncommon Cures, Cure AHC, and the Sanofi Advisory Board, where he helps accelerate research toward therapies and cures for rare diseases.