Hi everyone,

Let me add my words of encouragement to all patients to contact
Plavi. I have known Plavi for several years, and we have exchanged
information on dysferlin research, news, and approaches to developing
treatments. She is both very knowledgable and very committed to
advancing things towards treatments and cures.

Having a registry of patients will be of immense help to advancing
research--since dysferlin deficiency is not that common, one thing
holding up research is for researchers to find enough patients to test
their ideas, and to provide meaningful statistics. All of us can help
with that.

Best wishes,
Brad