Approaching families for donations - PAS, PSSD

General Discussion Media & Awareness
#1

Recently there was a note from the PFS Network … families of patients are the biggest donors to the PFS Network.

The same observation can be made about the research into Accutane. Often the biggest donations came from families who were bereaved.

So, there is probably an opportunity to contact families of PAS and PSSD patients - for donations to the PFS Network.

The missing thing is some kind of short explainer, on why the PFS Network-backed research is useful to all patient groups. Put another way, discoveries made in PFS patients are likely useful to PAS and PSSD patients. Moving the research forwards benefits all groups.

Is there any text that makes this link - for sharing with families of PAS and PSSD patients? So that donations can be increased.

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#2

Pete, How much money have you donated to pssd network?

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#3

It’s highly likely that that its the same mechanism effecting all of these groups. We should be working together as one not as seperate entities. BUT having more than one project/study would also prudent we don’t want all of our eggs in one basket. Collaboration and establashing a central fund where equal amounts would be directed towards related studies would have been the most senssible approach to me. Also having a place where we all come together as one big community would have also had merits. I expect the majority would have seen the benefits in this as ultimately we all have the one and same goal.

Nonetheless I’m very grateful for what has and is being done to help.

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#4

Hi Rig22, I hadn’t seen there was a PSSD charity until now. By all means, people will back the one they prefer.

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