What @Northern_Star has said is indeed accurate - PropeciaHelp and PFS Network are the same people, but different entities that are focused on different objectives. Through PH we aim to give the community a platform to share their experience and find support, and through PFSN we aim to advance awareness and research into PFS.
PFSF is a separate organisation, but we communicate regularly, have a good relationship and collaborate where possible. We have mentioned this in our 2021 research thread, that the Foundation will assist us in fundraising when the opportunity is ready to present. They are absolutely still active.
Regarding the only people being interested in figuring out our condition being the Italians, that’s also not true. Axo has been meeting with dozens of scientists over a period of multiple years, the overwhelming majority of whom are interested in helping. But as we have mentioned elsewhere, we simply cannot prioritise every study that is proposed to us if they are not the right study, due to the scarcity of resources that exists in our community. Many patients do not have large sums to contribute and therefore we need to ensure whatever we present to the community contemplates the complete symptom profile, uses cutting edge techniques, is appropriately designed and is executed by those who are pre-eminent in their field. We work every day on solidifying the most appropriate study to present to you all.
We have mentioned it on many other threads, but there is really no reason to spend so much time worried about the Foundation, Baylor or anything else that is completely out of our control. We have presented many projects for patients to get involved with, which amount to the necessary small steps required to start to climb our way out of this problem. These include putting aside money for research, speaking publicly on our new podcast series which we are currently filming and asking your family or friends if they can assist with our Family Advocacy Group. I also posted recently about looking to expand our group to include more volunteers, for projects that may not even exist yet, so if you would like to get involved please reach out to me privately.