@axolotl posted an update on this just 5.5 weeks ago:
This is largely unchanged. Things were looking promising before the pandemic, and we hope that we will be able to continue from where we had to stop, when Covid-19 halted everything. The good news is that from these discussions a clear idea emerged where to look next research-wise. Meanwhile, we are working on possible ways to get funding organised and additional outreach efforts, including a new video project that, unfortunately, has so far largely been ignored by the user base: New Propeciahelp Video Project: What is PFS?
It is important to keep expectations in check: We are a small community with few resources, with a rare, underappreciated and widely not accepted condition, a condition whose symptoms are often invisible and associated with significant stigma (e.g. depression, erectile dysfunction). The good news is that we now have 11 dedicated staff members and we have helpful community members who want to overcome these challenges. But overcoming them will be more the case of steady drops hollow the stone than one big hit to crush it as we cannot afford a jackhammer. Every member can and should contribute to the constant flow of drops that hollow the stone by:
Contacting us if you are willing and able to provide significant funds as this would speed up our discussions with scientists
Contacting us if you have other ideas to recruit scientists, funds or other resources, or if you think you have other skills that may help us to get there; or if you are just willing to help in any way possible.
If there are things on the list that you haven’t done yet for no good reason, do it! Every drop counts!
Thanks for your reply, @Northern_Star. I must have missed that post.
A good summary.
I feel that many members would be glad to donate money to fund research. I know I would certainly be willing to give generously. Instead of waiting for one ‘angel’ donor we could surely create a pool of funds that could help entice scientists to investigate our problem further. But I feel we need a clear ‘vision’ and assurance that the path is the best way forward before people will donate with enthusiasm.