Limb Girdle Muscular Dystrophy

Helllo @mmbamfra0019. I combined your discussion with an existing discussion titled, "Limb Girdle Muscular Dystrophy" - https://connect.mayoclinic.org/discussion/limb-girdle-muscular-dystrophy/.

I did this so you could meet members like @ditamontoya and @oldkarl who shared their experience with Limb Girdle MS.

@mmbamfra0019 - has this new diagnosis been confirmed, or is it something they are exploring in addition to your IBM diagnosis?

they are exploring and I wont see the specialist Dr Tohidi from Orlando Health in May 9

Anyone with information on "Right to Try" Act for LGMD2A?

Hi,
Anyone know how to pursue the "Right to Try" act for clinical trials with LGMD?

Hello @betsy7 - I combined your discussion with an existing discussion titled "Limb girdle muscular dystrophy" - https://connect.mayoclinic.org/discussion/limb-girdle-muscular-dystrophy/ to meet @mmbamfra0019, @ditamontoya and @dbwhitted.

@betsy7, have you been denied a particular treatment or trial and that is why you are inquiring about the right to try act? For anyone wondering, the Right to Try Act is as follows: https://www.fda.gov/media/133864/download#:~:text=Right%20to%20Try%20is%20one,and%20Drug%20Administration%20(FDA).