José and His ALS Story

Mam� and me c.1969
Mam� and me c.1969
Good Counsel
Crater Lake
About Us

It was devastating. The initial diagnosis was at Emory University Hospital, right after the Stanford GSB 25th year reunion in 2012. While it may have been premature (there is NO definitive test for ALS), the diagnosis turned out to be correct. After that, we went to The Mayo Clinic in Rochester, MN, in August of 2012, for a second opinion. They determined there was something amiss, but it did not, at the time, rise to the level of ALS. We felt hope. We were asked to return in six months for a follow-up. I felt strong and saw little change, so rather than going back to Rochester in February (Brrrr!), we returned in August of 2013. The symptoms had progressed, the diagnosis given: amyotrophic lateral sclerosis - ALS.

That is not the beginnning of the story, however. My life prior to that had been a series of very high highs and very low lows. Among the latter, were the Cuban Revolution of 1959 (when our family was left to flee leaving everything behind), the death of my father when I was six years old, and my older brother having been killed riding his bike home from school a year later.

My mother decided that, if the future were to be better, a widow with a small child would have to start a new life in the U.S. So, once again, we immigrated to another country to start anew. In May of 1968, with $200 in her pocket, mom and I boarded a bus in Mexico City for the four-day, three-night trip to Washington D.C. That is where we settled because relatives, also having fled Cuba, had ended up there. 

Mom believed in education and sought the help of the parish Priest to allow me to attend Holy Redeemer, the parochial school where my cousins had their children enrolled, even though she could not afford to pay but a small franction of the tuition. When the time came for high school, the same story was told. The Xaverian Brothers of Good Counsel High School in Wheaton, MD were incredibly generous in subsidizing my education. Things certainly were moving in a good direction thanks to many people who helped, but especially to mom.

From high school on to Georgetown University and, eventualy,  the Stanford Graduate School of Business. Things were, indeed, very good.

Work life was a series of fun challenges with a variety of companies such as PepsiCo Restaurants and The Walt Disney Company. It was during my stint at Disney that I had the best day of my life: I met my soul mate, Ben Trust, with whom I was negotiating a deal for a restaurant to be put in The Disneyland Resort. Ben and I have been together ever since. The restaurant never happened.

Along the way, I had managed to begin to give back for all the support mom and I had gotten: I was chariman of a children's charity in Los Angeles; was apporinted by Pete Wilson, then Governor of California, to the CA Mentor Intitiative; was a youth mentor, a became a champion for diversity in education and the workplace. These are among the many rewarding opportunities that came my way.

When the diagnosis came, I was in great shape, as evidenced by this picture of me at Crater Lake. There was no way, I thought, I could be so diagnosed. After all, we ate all the right things and exercised regularly. As I said - the reality was devastating to us.

After nearly a year of being in shock, it was clear we had to get back to living life. Heck, we had to get back to work! We decided to move to Santa Barbara, CA for its healty and soulful lifestyle. Today, Ben is carrying the load on the work front. I am now dedicated to increasing awarenesss for ALS and in raising funds to help find a solution. We are glad you are with us and appreciate your help.