my observations tend to lean towards the consistent rate of retention that Acadia refer to.
I would say that the Retts Facebook groups are designed to be help groups so people with issues are more likely to post.
I know for a fact that there are examples of mischievous people polluting the groups.
Mel on the private group called out a poster who specifically came in to cause trouble.
Mel quickly shut them down and they ended up deleting their profile quick smart. (Thanks again Mel)
I also had an interesting interaction with someone who was not willing to accept any advice and tried convincing people to stop.
I probably shouldn’t have but I sent a private message about using Acadia resources and other options.
It was probably none of my business and she didn’t appreciate the message.
However I found her response excessively strong. So I did a bit more research and found that the person was heavily involved and invested in a gene therapy for Retts.
My conclusion was she was trying to put people off Daybue and steer towards her interests.
The point is I don’t think we should jump to conclusions based on assumptions from social media.
I will use it only as reinforcement for the figures published by Acadia and Neuren.
These are the only statistics and figures that really matter.
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