Nih has promising info to give us

Addyson’s Nih dr and researcher emailed us. They have promising information they want to pass along to us. They are going to see us April 9th!! This will also be her 6 month check up with them since she’s almost out of her clinical trial meds.

That day we will do:

  • her semi annual lab work
  • Meet with her new dr at Nih
  • Talk to her researcher/scientist who has been studying her dna and information for the past 3 years
  • Get refill on meds
  • Etc

She’s always been an unusual case for them because her dna shows she has fmf but we have successfully been treating her with meds for pfapa.

Can’t wait to hear their update!

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