This is not a very active group unfortunately as you can see by the slow responses or no responses... I am 39 years old and was diagnosed when I was 14 at which time i did not follow the diet well. Right now I am more or less on track with diet and regular doctor visits with local doctors at Inherited Metabolic Deceases Clinic. I am a bit old fashioned in tracking my daily protein, i simply use paper. I could not find an easy to use phone app for myself. I basically write down protein amounts for foods I eat either from memory (for more common and frequent foods) or from the food labels. If you had any specific questions, I can try and answer them for you and your daughter.
I am not aware of anything related to GA and gene therapy.
On the other hand, I had a question for you. Was it recently that you went to NIH and Dr Valle? i was seeing them many years ago, probably last time was in 2005 and I thought both programs were closed. Is that so or are they still seeing patients currently?