Membership in the Foundation is open to patients, caregivers, and others interested in supporting  patients and furthering research into this disease. Membership is free and completely optional. All of the resources and services of the Foundation are available free to members and non-members alike.

As a member, however, you will have a voice in the Foundation, lending your input to key decisions, making your voice heard by the medical community. We had originally developed a blog site for posting messages. However we have found that a more direct way of communicating via email will be more effective. In addition, the Yahoo Forum remains the best way to communicate with other patients and caregivers. Please join the Forum if you have not already. Communications for members will be coming thru email as we further develop this phase of the foundation.