Co-Founder And Executive Director
CurrentLed efforts to raise awareness around rare diseases, raised money to fund research, and developed methodology to approve grants.Launched and led the organization, driving initiatives that raised over $4 million, including funding 15 research proposals totaling over $2 million for rare disease research.Sponsored groundbreaking research at top institutions such as UPenn, UCLA, and leading European research centers, significantly advancing the development of treatments for ultra-rare diseases.Allocated over $550,000 to patient support and advocacy efforts, assisting rare disease patients and families in their efforts to influence US policy.Devised and implemented an Investment Policy Statement, ensuring proper fiduciary management and growth of the charity’s reserve funds.
