[hgh]

We had a scare around Cystic Fibrosis. I admire your courage and compassion - my best to you and your family.

The story of how CF treatments developed (Trikafta) is remarkable. KS seems much rarer than CF, but I recommend studying how the CF Foundation evolved. https://www.cff.org/about-us/our-history

There are lots of good suggestions in the thread. It seems you're already doing this, but I recommend connecting with people (e.g. families of those with KS, medical professionals with an interest, marketing volunteers, ...) and keeping in touch. This can help create momentum behind a movement, leverage networks, and mutual support/encouragement. We also very much appreciated connecting with others affected by CF during that time.

[halukakin]

I wasn't aware how much they raised. The figures sum up close to billion $ so far. I think there is a lot to learn from them. Thank you.