Friedreich's ataxia Research?

[JDK]

.  I am a 42-year-old male with late-onset Friedreich's ataxia, the
oldest of three siblings with the condition.  I was originally
diagnosed in 1973 at Memorial Hospital, Chapel Hill, NC.  In 1978, Dr.
Alan Roses  at Duke University examined me for a few days.  In 1988 I
participated in a study at The University of Michigan in which P.E.T.
scans were used.

I'm interested in being involed in research efforts for this
condition.  I am college educated and feel, at times, somewhat
frustrated that I'm not involved in some way in researcg efforts as a
willing, articulate research patient.  I would appreciate any
information on volunteering for research, institutions currently
involved in researching FA or similar conditions.

  Thanks.
     J.David Kiser    sherlock at mailbox.ioa.com