Love love love your concept and I shall check out and my partner, Allie Merrick, @ Engagemeant.com can certainly lend a hand. We a bit tied up right now with the following pro bono project for Prader-Willi kids (details follow) and infact I was told today that a deaf girl is designing images for 'em pro bono. I will put you in touch with her as well as soon as I get her contact info.
PWS Exchange's new website, hosted at www.pwsexchange.com will point to a spankin' new social network site, www.pwsilounge.com, built pro bono by Engagemeant (Kerry Martin & Allie Merrick @ www.engagemeant.com).
On our new social PWS village, built for parents with Prader-Willi children, website visitors will be able to easily and quickly set up their own personal profile page (upload content including photos, videos, RSS feeds etc) and connect virtually with other parents whether by a live or private chat room or via email.
PWS parents will be able to join Groups set up and moderated by volunteer parents with each group speaking to PWS children in different age groups (e.g., PWS newborns, PWS toddlers, PWS preschoolers, etc). And, with a click on a button, parents can share site content on their own Facebook walls, Twitter accounts and other social media channels/outlets.
We invite you to let us know if you would like any specific site features and functionality built into our new PWSiLounge. And if you're interested in taking part in the design and development of this site (by providing content, graphics, etc), please contact Kerry @ firstname.lastname@example.org or Allie @ alliemerrick.com.
For more on what Engagemeant is working on please visit http://www.engagemeant.com/get-heard.html.
Engagemeant looks forward to our collaboration and hopes to have your new www.pwsilounge.com site launch on May 15, 2011. We are also going to contact Facebook on your behalf to see if we can change the name of your FB page to PWS Exchange (currently FB does not allows this once you have 100 LIKEs but we're hoping they will make an exception on your behalf).
p.s. we are building similar social networks for parents, military families, gay teens and other special interest groups using Ning.com's social media platform. Please do let me know if any of these projects float your boat and if interested in lending a hand Tami.