Progress Update: Flex fund for clinical study participant reimbursement

See grant Travel Reimbursement for Clinical Study Participants

The past year of this grant coincided with COVID, thus the activity of our clinical work was curtailed. These funds supported travel and other costs for participants associated with two clinical studies: one in which skeletal muscle biopsies are taken from FSHD and control individuals (Kyba, PI) and one in which metabolic parameters and exercise tolerance are studied in FSHD and control individuals (Keller-Ross, PI). Prior to the University of Minnesota pausing all clinical protocols in early 2020, we had accrued two FSHD study participants, both of whom participated in the biopsy study, one of which participated in the metabolism study. When clinical research was reopened, towards the end of the year, we accrued four participants, 2 of whom participated in both studies, and 2 of whom participated in the metabolism study alone.

The total number of participants: 6

Total reimbursement disbursements: $1,096.92


One publication was submitted, revised, and accepted over the past year, and a second study, on resting metabolic rate, has been submitted, with attribution to the Friends of FSH Research.

1. Vera KA, McConville M, Kyba M, Keller-Ross ML. Sarcopenic Obesity in Facioscapulohumeral Muscular Dystrophy. Frontiers in Physiology. 2020 11:1008.

Future plans:

A no-cost extension has been requested and conditionally approved. We plan to continue reimbursing study participants for these two studies from the remaining funds.