In 1996, aplastic anemia caregiver Vince Wessling created an email-based listserv named AA-MDS-TALK. It let AA and MDS patients help each other by exchanging information: asking questions, giving answers, telling their stories, and offering support to others. Ruth Cuadra served as co-moderator.
The listserv helped hundreds of patients and family members deal with a wide range of issues. Many of the messages were simple shows of support, as the patient community learned to be its own advocates and cheering section.
Marrowforums Replaced AA-MDS-TALK
In 2006, Neil Cuadra, Ruth Cuadra, and Vince Wessling launched the Marrowforums website as a replacement for AA-MDS-TALK. Marrowforums serves the same purpose, as the home for person-to-person discussion and support for patients and family members dealing with AA, MDS, PNH, and other bone marrow failure diseases. The AA-MDS-TALK listserv is now closed (see news story).
Marrowforums now hosts the AA-MDS-TALK Archive, the collection of listserv messages posted to AA-MDS-TALK in 2002. The messages, originally submitted to the listserv by email, appear at Marrowforums as a searchable forum, with threads for each month.
The AA-MDS-TALK Archive is closed to new posts but registered members can browse it by year and month and search it by keyword. Since Marrowforums registration is free, anyone who is interested in the AA-MDS-TALK Archive can join Marrowforums and access it.