Ramsey Shahed, Brandi Witt & Dave Lukas of the Chicagoland Chapter

An interview with two people from the Chicagoland area who live with FSHD. Ramsey Shahed is a 21 year old student at DePaul University studying for his master’s in cybersecurity. He was diagnosed around ate 14 and has been thriving ever since.

Brandi Witt is married to Dave Lukas, director of the Chicagoland chapter. She understands the challenges of living with a rare disease more than most people, having seen her first husband decline and pass away from one such rare condition. When Dave was diagnosed with FSHD, it was as though lightning had struck twice. Brandi brings to our community the hard-won lessons she learned as a partner, caregiver, and fierce advocate to drive change and advance treatments for rare diseases.