Gaucher Community News - National Gaucher Foundation

Genetic Alliance Announces
2006 Award Winners
Edwin H. Kolodny, M.D.
New York University School of Medicine
Department of Neurology
550 First Avenue
New York, New York 10016
Dr. Edwin Kolodny is a recipient of the Genetic Alliance Art of Listening Award. An alumnus and
longtime faculty leader at New York University, Dr. Kolodny works tirelessly with patients and families
living with genetic conditions including Canavan, Tays-Sachs, Gaucher, and Fabry.
The following are just a small sampling of the testimonials praising his work:
Lesley Bennett writes:
For the last 16 years, Dr. Kolodny has been my daughter Kelly’s neurogeneticist.. . . During Kelly’s first
appointment, my husband and I realized that Dr. Kolodny was a unique physician who listened, then
offered advice not just for Kelly, but for our entire family. He was compassionate and not afraid to tell us
that he might not be able to diagnose Kelly’s specific neurogenetic disease. He understood our
frustration and told he that we had to become Kelly’s advocates, and that he would help and try to
improve the quality of Kelly’s life. Over the last 16 years, as Kelly’s neurogeneticist, Dr. Kolodny has
done that by going out of his way to answer questions, offer advice, and communicate with Kelly’s
pediatric specialist. Dr. Kolodny even interrupted his sabbatical several years ago to return our frantic
call for help and saved Kelly’s life when he realized she was having a life-threatening metabolic drug
reaction...Idonotknow how many patients and families Dr. Kolodny has gone out of his way to help,
but I suspect it is a large number.
Rosalind Poss Rosen, former President of the Canavan Foundation, testifies:
The Canavan Foundation has had many opportunities to refer families with children with Canavan
disease (CD) to Dr. Kolodny. Without exception, the feedback we have received from these and other
families is that Dr. Kolodny is a unique, caring physician who is dedicated to his young patients and the
concerns of their parents. It is a rare person who can communicate with and assist parents whose
children have a fatal disease such as CD, but that is a role that Dr. Kolodny regularly fulfils.
Grateful Parents (who wish to remain anonymous) affirm:
Dr. Kolodny has given us tremendous support, both medically and ethically. He was most patient in
helping us through many complex decisions. He has listened very carefully to all aspects of our difficult
problems, not only with his ears, but also with his heart, and has compassionately offered us invaluable
direction. He has shown personal interest in our child’s well-being, making it a point to follow her
progress over the past decade ...Heisoneofthemost altruistic and humanitarian doctors we have
encountered. He truly maintains his Hippocratic Oath.
We honor Dr. Kolodny with the Art of Listening Award for understanding the importance of listening as
an invaluable key to understanding and for his ability to ease the difficult—often frustrating—journey
faced by individuals and families dealing with the uncertainties and ambiguities of a genetic condition.
Thank you, Dr. Kolodny.
Please join us in celebrating Dr. Kolodny at the Awards Banquet on Saturday, July 29, as part of the
Genetic Alliance Annual Conference.