On episode 47 of Beyond Labels & Limitations, John Graybill talks with Brad Williams about his life with LGMD2B/R2. Brad shares how he waited nearly 18 years to find out what he had. Brad was a figure skater, runner, very athletic in his youth but around the age of 18 he noticed he couldn't stand on his toes. The gene for LGMD2B hadn't been discovered yet, hence he had to wait until it was. Brad also shares how important it is to be a part of registries. In order for researchers to figure out what's going on with you, they need to know you exist. The Jain Foundation is one registry for people with LGMD2B. But, the Jain Foundation can also help those who don't have a specific diagnosis get one.
Here's the Jain Foundation link: The Jain Foundation
Here's Brad William's YouTube Page: Brad Williams YouTube Channel
Here's the Speak Foundations Link to sign up for their registry: The Speak Foundation
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"Desire to Inspire" TKG