Tag Archives: patient meeting

Our Manhattan Project

Matthew Harms MD

The FSH Society’s March 11, 2017, meeting in Manhattan was a milestone in our efforts to nurture a network of stakeholders in one of our most concentrated urban centers. Hosted by FSH Society Board member Stuart Lai, this meeting featured two stellar speakers, Matthew Harms, MD PhD, of Columbia University College of Medicine, and Jia-Ray Yu, PhD, a postdoctoral fellow working in the world-renowned laboratory of Danny Reinberg, of the Howard Hughes Medical Institute at New York University Langone School of Medicine.

Two dozen patients and family members from New York City and beyond attended. For many, it was their first time meeting others with FSH muscular dystrophy. Continue reading

Upcoming Denver FSHers Meeting: March 25th, 2017

Written by Beth Johnston, Development Officer at the FSH Society

When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his body), we couldn’t pronounce the disease, let alone understand what it all meant for our family.  I discovered the FSH Society several years later (thank goodness) after moving from Denver to New York – and began the journey of discovery and hope.

Fast forward 16 years, 2 kids later, and we are back in Denver. One thing that has kept me hopeful and sane during these years is the camaraderie of patients and their families and friends – all working together to raise funds, raise awareness, and share helpful information with one another. Continue reading