Dr. Collins runs a clinical study on MAS/FD. Without the information that he and his team (beginning 20 years ago with Dr. Penelope Feuillian) have gleaned from years of study this group of patients would be in even more desperate shape. Still there is little treatment for this collection of endocrine troubles and crippling bone disease.

Dr. Collins is working on small molecule research. Dr. Pamela Robey is working on mechanisms of bone – hopeful that someday a scaffolding material could help repair the damaged bones, and perhaps gene therapy also (working with researchers in Italy).

Families sleep better at night knowing that at least a few are at work on this terrible rare disease.