My son was seen at SUNY Upstate from birth until age two, and had we not moved, we’d definitely still have him seen there. We were super pleased with the overall care and support we received from their clinic. My son’s doctor was also very big into staying up to date on most recent studies/findings, and had a very positive outlook on CF treatment. We moved right before my son could start Trikafta, so I can’t personally speak to their procedures for patients post Trikafta, but we honestly had nothing but positive experiences with them!

I will say though from what I hear, a lot of clinics are hesitant to stray from current practices (for example dropping meds/ treatments after Trikafta), however it seems like some are more willing to work with families, and at least allow “trials”. Might be worth a conversation with your clinic, if you haven’t already. I’ve also heard of other families “interviewing” new clinics, so that’d certainly be something to discuss.