Why rare bird?
Just after she turned a year, our little Safurah was diagnosed with MEF2C Haploinsufficiency Syndrome (MCHS), a rare disease that none of us, nor any of her doctors or therapists, recognized. But we knew early on that something was wrong. At 2 months old, she couldn’t control her head, make eye contact, or reach for toys. We were told she had no sense of where her body was in space, which helped explain her inability to move functionally. She often gagged on her food, and eventually was diagnosed with seizures that manifested relentlessly. She spent days in the hospital with unknown and untreatable complications.
We believe, however, that a life of illness, difficulty, and dependence won’t be the fate of Safurah and her peers.
Safurah’s name means “little bird.” Inspired by her story, Rare Bird was founded with the goal of helping every kid with MCHS take off and fly.
Our Focus
MCHS shapes the lives of affected children and young adults life in profound ways. But there is currently not a single therapeutic tailored to the unique facets of this debilitating disease. That’s why Rare Bird is laser-focused on facilitating the pursuit of pharmaceutical treatments that will help improve the quality of life for those living with MCHS. We are committed to advancing therapeutics from the lab to families as quickly and safely as possible. To do so our work is focused on:
1) Efficient and dedicated fundraising: we collaborate with our partners, supporters, and affected families to raise funds that drive our scientific research and priorities.
2) Expert-advised strategizing: we work with our team of expert advisors to pursue strategies that efficiently advance therapeutics tailored to MCHS;
3) Broad-based awareness-building: we build awareness in among researchers, industry, and affected families about MCHS and our latest research and advancements.
Rare Bird Team
Hiba Bhatty is an award-winning architect, designer, content-creator, and youth mentor in Los Angeles, California who graduated from the Yale School of Architecture.
Najah Bhatty is a licensed clinical social worker and disability rights advocate in Chicago, Illinois. She has worked with children and adults with disabilities for over 15 years and is a graduate of the University of Chicago.
Ahmed Elghazaly is a financial executive with a background in economics, and an MBA with a focus on leadership and strategy. Currently, he works in consulting with a focus on investment and wealth management.
James Kelly has a background in Mechanical Engineering and works in research and technology for a Fortune 150 company. James co-led the “Pathways for Hope” MCHS drug discovery program and is the father of a 4-year-old with MCHS.
Noor Osman is a VP of Healthcare Technology for an Accountable Care Organization based out of New York City. Noor is a biochemist and specialist in Environmental and Occupational Health.
Isra Bhatty is a lawyer, former policy director at the White House, and Rhodes Scholar. She previously represented pharmaceutical companies before the FDA. A graduate of Yale Law School, the University of Oxford, and the University of Chicago, Isra is the mother of a 2-year-old with MCHS.