When I look at the map pictured above, I see community. I see families across the country who's lives, while different, look much like mine. I see hope for a brighter future. Most importantly, I see that I am not alone.

I'm often asked, "Why are there so many registries?" The answer is simple, because so many people care. All of the registries are different in one form or another, some are more extensive than others, some are more medically based, ours - for example - is the only registry building a visual representation of our community using geo-tagging. 

For the past eighteen years, the Joshua Frase Foundation has housed a database of families, celebrities, pro-athletes, and donors with absolutely no breech in privacy. Many of you have been connected with JFF for a long time. What we are asking you to do now is to update your contact info via this registry so that we can present a united front to the world. We need to know where you are!

This registry is for individuals diagnosed with CNM/MTM, female carriers of MTM, and the precious family members we've lost to this tragic disorder. It will take about 5 minutes of your time. 

Currently, we have over 250 individuals registered - but there are MANY more that we're missing. We are confident of this because JFF's database is not completely up to date on this registry. 

For more information regarding the registry, read our FAQ's. 

To REGISTER TODAY and see yourself pinned on the map, click here.

We welcome all registrants regardless of your participation elsewhere!