Have today received a reply about sending everyone's comments:
" Dear Mo
" I work closely with Seb Coe and am also a trustee of his Foundation. I just wanted to thank you for your kind words and for taking the time to pass on other people’s responses to the news of Seb’s Foundation. Seb was very touched and is determined to make a difference in finding a cure and helping sufferers of PSP.
" It is early days for us but we do hope to raise some significant funds in due course. Thank you for writing and do stay in touch.
Susie Black "
Looking forward to hearing more - the latest PSP Association publication/journal "PSP Matters" did carry an article but it didn't say more than we already knew.