Just want to note that there are two (maybe more) PRS groups on Facebook. I'm seeing people posting on this board and not getting (many) responses. You might have better luck on Facebook. Search for the community "Pierre Robin Sequence Support", which has a nice section under discussions where people are posting their stories, or the non-profit "Pierre Robin Sequence Foundation".
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.