About alpha (alliance of Parkinson's health activists)

We are people living with Parkinson’s disease (PD).

Ever since Dr. James Parkinson first described the Shaking Palsy in 1817, others have been speaking for us: describing our disease, suggesting how we should be treated for it, how we should respond to it, and how it has and will continue to affect us.

We believe that now is the time for those of us with PD to speak for ourselves.

We tend to be the younger people with PD who were diagnosed relatively early in our lives. Because of this, we are faced with concerns that do not reflect those of the majority of people with PD. But while this sets us apart, the fact of the disease—its degenerative progression—means that we share many of the same issues and experiences with them.

We have a vast network of all ages and stages of PD built up through years of meeting at conferences, symposia, and especially online, where daily there are vigorous discussions on topics pertaining to PD and the lives of people who have it. And we have direct access to information about our disease through the Internet.

is an identifiable entity, founded by a number of people with PD, in order to best address concerns—current and future—of the community. This includes “health activism,” publicizing body work and other activities known anecdotally to be beneficial even if not scientifically proven. Just as patients were ahead of the curve on the role of cognitive problems in PD, so we will remain open to discovering more about this disease through the experience of those with the disease.

will also create and provide a speakers bureau, blogs, boards,position papers, space in which to discuss topics, some that are important to the patients, but unrealistic to be taken up by the traditional national PD organizations. It will provide a platform for discussion and action on subjects as diverse as housing and home care and the dubious practices and illegal activities in the Pharma industry.

On its website, will link to pertinent PD organizations and sites.