Name: Jason Goldfeder

Hometown, State: St. Louis, MO

Age: 38

Family:
Wife: Nguyet Nguyen

Hobbies/Interests: Sports, skiing, travel, television

Date of ALS diagnosis: November 5, 2004

Tell us about your life before ALS:
I worked full-time as an Assistant Professor of Medicine at the Washington University School of Medicine in the Division of Medical Education in the Department of Internal Medicine. My primary duties were to serve as the Director of the Wohl Medicine Clinic and as one of the Associate Program Directors for the Internal Medicine Residency Program. I was closely involved in the daily teaching of interns and residents in their medical training. I devoted much of my spare time to the hobbies and interests listed above.

Tell us about your life with ALS:
After being diagnosed with ALS, I tried to keep my life as normal as possible for as long as I could. I spent much of the next year and a half traveling while I was still ambulatory. I continued to work full time for almost three years until I had to stop in July 2007. I am still active at the Medical Center via volunteer work at the clinic involving teaching of medical residents. Over the past three years, I have had to make numerous adjustments in my daily routine as my disease progressed.

Tell us how ALS has brought new significance to any aspect of your life - family, attitude, hobbies/passions, career, etc. :
Being diagnosed with ALS has changed how I prioritize many things. While I continued to work full time, I realized that spending time with family and friends was much more important than work. I have tried to maintain as positive an outlook as possible while my body continued to decline and require more assistance with everyday activities. I certainly have learned a lot about what it is like to be disabled and how the general public views a person with significant disabilities. Lastly, I have tried to be involved in ALS clinical trials to further advance our knowledge about possible treatment options and am currently enrolled in my second clinical trial.

Do you have a “life motto” or “profound words to live by”:
Maximize the time that you have left by doing things that you enjoy and spending quality time with family and friends.

Has there been an “a-ha!” moment or a specific turn of events that has helped you live with ALS?
Since I was diagnosed with ALS, I have tried to live my life as normally as possible for as long as I could, even though my body has continued to physically deteriorate and I have required increasing amounts of assistance.

Is there anything else about you and/or ALS that you want to share with people who read your story?
I firmly believe that continued support of human and animal research, including embryonic stem cell research, is vital to finding cures for debilitating diseases such as ALS. I also feel that people with severe physical disabilities may be totally mentally intact and, therefore, deserve to be treated with compassion, empathy and respect.