Clinical Trial Participation

The FARA patient registry is the only worldwide registry of Friedreich's ataxia patients.

Over 1200 Friedreich's ataxia patients, from across the United States and internationally, have registered their demographic and basic clinical information in this database.

Participation in the FARA patient registry ensures that patients are informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials. Please sign up today.

Refer to the right hand column for information on active clinical trials.

Autopsy and Tissue Donation Program

FARA supports a research program at the VA Medical Center in Albany, New York. The principal investigator, Dr. Arnulf Koeppen, is a neurologist and neuropathologist and has made significant contributions to our understanding of FA and other ataxias. He has provided insight about severity of illness and cause of death to many FA families who lost a loved son, daughter, brother, sister, wife, or husband. Dr. Koeppen collaborates with many FA researchers all over the world. He shares his experience with other investigators and makes available valuable FA tissues for ongoing and future research.

Tissue donation

Patients with FA and their family members are invited to inquire about autopsy and tissue donation for research. Friedreich's ataxia is a very complex disease and affects spinal cord, nerves, brain, heart, bone, and the insulin-producing cells of the pancreas. When a person dies from the complications of the disease, a rapid autopsy will allow researchers to harvest important organs for detailed study. The goal is to learn as much as possible about FA and apply new knowledge to diagnosis, treatment, and care of other patients with the disease.

For information and formal enrollment in a research program, contact

Dr. Arnulf H. Koeppen
VA Medical Center
113 Holland Ave
Albany, N.Y. 12208
Tel. 518-626-6391; 518-626-6377
FAX 518-626-6369
e-mail: arnulf.koeppen@va.gov

Parent Perspective

Mary-Lisa is a parent who has gone through this process. She offers her compassion and wisdom as she helps organize the donation. Studies of her son's organs have played a key role in understanding the effects of the disease on heart and other organs.

For additional information for families on donations and help making the arrangements, contact

Mary-Lisa Orth
FARA Tissue and Organ Donation Liaison
10000 N Feldman Rd
Tucson, AZ 85653
Tel. 520-616-9883
Cell 520-403-0577
e-mail: Rocketmom@att.net
FARA e-mail: Mary-Lisa.Orth@curefa.org

The FA research community is optimistic about advances in our understanding of the disease and new treatments. Many of recent breakthroughs are based on research that has only been possible because FA families have donated tissues.