The Yahoo! group devoted to adults with HPS (or others with albinism and related syndromes) reached 100 members shortly after the HPS New York Conference. The group will be six years old on July 11, 2010.
The group was founded by Heather Kirkwood, vice president of the HPS Network (before she was the vice president).
“My very first HPS conference meant so much to me. I felt I had to have a way to more easily stay in touch with the HPS community all year,” says Kirkwood, “We started out with 10 members and today we’ve reached 100. Considering how rare HPS is, that’s pretty amazing.” Today the group has three moderators: Heather Kirkwood, Carmen Camacho and Chris Fenlon.
The group gives those with HPS a place to connect with one another. Because the group is limited to those with HPS (with a few exceptions) members feel as though they can share their HPS experiences without worrying about concerning their families or others.
There is also a Yahoo! group for parents of children with HPS and families affected by Chediak-Higashi Syndrome. If you have an interest in any of these groups, e-mail Heather Kirkwood at: firstname.lastname@example.org. Please put HPS or CHS in the subject line.