Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis.
To watch the broadcast video clip, click here.
After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life. “It was very hopeless,” said Brchan. “They knew very little about the disease. There wasn’t anyone focusing on the disease. Basically, each year you find you lose more and more ability to lift, to walk.”
“[For] patients with this disease, one of the saddest things that happens [is that] they are robbed of their ability to smile,” said Dr. Kyba. Along with his staff at the University of Minnesota, Dr. Kyba is doing grant driven research, now that the gene causing the disease has been identified.
“The hope comes down to there is actual work being done to discover the drug. About 10 years ago, we didn’t know what gene caused this disease,” said Kyba. “That’s our hope that someday in the near future we’ll have candidates that we can actual take to clinical trials. “
Marge is currently volunteering everything from blood samples, muscle biopsies, stem cells, anything she can to help Dr. Kyba’s research. “I’ve participated in a few research studies over the years, but nothing that is this concerted effort that we see now internationally,” said Brchan.
Two of Brchan’s three children have the same disease, along with four of her eight grandchildren. From her view, the hope behind this research is for them. “I do have hope,” she said. “I’m 72, the hope is not that I’m going to start running marathons or anything like that, but for my children and grandchildren.”
For more information about the research being done at the University of Minnesota go to: https://www.mdcenter.umn.edu/.
Credit: FOX 9 KMSP Minneapolis
Thank you for this article. Marge is my cousin. A number of her cousins also have FSHMD.