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Cynder Sinclair: Beloved ALS Victim Peacefully Passes Away But Lingers in Our Heart

José Cofiño of Santa Barbara lived his life with dignity and joy, serving as an example for all

José Cofiño of Santa Barbara passed away this month after a years-long battle with ALS. Click to view larger
José Cofiño of Santa Barbara passed away this month after a years-long battle with ALS. (Contributed photo)

Two years ago, I wrote an article about José Cofiño because when I met him I was so impressed with his courage that I wanted to share his story with readers.

Many people in Santa Barbara and the South Coast have come to know and love Cofiño. He passed away earlier this month.

Cofiño’s longtime partner, Ben Trust, was at his side as he peacefully passed. His Facebook page reports that his passing was not unexpected and they had time to fully process what was happening. Cofiño left us with dignity as he always hoped he could.

During Cofiño’s decline, he and Trust shared weeks of visits with close friends as well as calls and messages from many others. It was all an amazing and wonderful tribute to Cofiño. He left knowing he was loved.

If you want to make a donation in his honor, please send to Santa Barbara Hospice or Compassionate Care ALS.

Here is the article I wrote about Cofiño that Noozhawk published two years ago. We can learn a lot from him about living our own life with dignity and joy.

Santa Barbaran with ALS Faces Finds Opportunity in the Challenge

Recently I happened upon one of those rare, eternally optimistic individuals who routinely looks for opportunity hiding beneath every rock of adversity. And his overriding confidence is not just for show. He really lives and breathes this approach to life every day — it seems to be part of his DNA. His hopefulness has nothing to do with the particular troubles or good fortune he encounters; rather, it comes from his way of looking at the world and expecting opportunities to emerge. And they do — consistently. Like others who meet him, I found myself wanting to watch and learn how he does this so effortlessly. So, I arranged for an interview with him at the French Press this week.

My research revealed that hundreds of business and civic leaders filled the Beverly Hilton Hotel last month to get a glimpse of this extraordinary Santa Barbara resident, José Cofiño, as he received the Courage Award from Augie’s Quest at a fundraiser benefiting the Cambridge-based ALS Therapy Development Institute. Cofiño was diagnosed with ALS three years ago, but he refuses to let his disease define him. In fact, he says he feels lucky that being diagnosed with a disease for which there is no cure allowed him to know what he wanted to do with the rest of his life. “Out of adversity, comes opportunity,” Cofiño said.

Adversity plagued Cofiño from his earliest years.

Born in Cuba, Cofiño was only 6 weeks old when Fidel Castro rampaged through Havana, creating chaos and disaster for so many, including Cofiño’s family. Eighteen months later, his family lost everything and found themselves in Mexico starting over. His dad set up a poultry shop, and Cofiño went to work in the shop plucking chickens at 5 years old. When he was 6, his beloved father died. A year later, to the day, a truck ran a stop light and killed his older brother as he was riding his bike home from school. With admiration, Cofiño relates watching his mom, now a widow and single parent, deal with all this adversity alone. His mom started teaching secretarial skills and foreign language.

In 1968, thinking that a single woman with a young child would fare better in the United States than in Mexico, she sold everything and moved to Washington, D.C., with only $200 in her pocket. She and Cofiño lived with relatives until she had enough money to rent an apartment. Cofiño recalls they had two lamps, two beds, and a cardboard box for a table. His mother paid a pittance to the parish priest for Cofiño to attend a private elementary and high school. After graduating high school, Cofiño attended Georgetown University, working full time with a full class load. Earning his way as a dishwasher in a hospital kitchen provided his first step into food service, which would later serve him well.

Cofiño sees everything through the lens of opportunity.

Here’s a glimpse into how Cofiño transformed these adversities into opportunity. He reports matter-of-factly that had Castro not ravaged Cuba and destroyed his family’s livelihood, he would not have left Cuba. Had his father and brother not died, his family would have stayed in Mexico. Had his mother not made such sacrifices to give him a parish education, doors would not have opened to even greater opportunity — such as his undergraduate degree from Georgetown and his master's degree in business administration from Stanford University. Cofiño insists that the key to his optimistic outlook is expecting opportunity to emerge from every adversity.

After leaving Stanford, Cofiño was flying high — driving fast cars, access to private planes, plenty of stock options. He had it made. But in the back of his mind there was always the thought that there must be something more. He felt empty in spite of his noteworthy accomplishments.

While at Georgetown, he wanted to be president of an overseas subsidiary. He did it by becoming president of PepsiCo restaurants in Brazil (KFC, Pizza Hut) while still only in his 30s. But the feeling that something was missing from his life persisted.

Adversity brings a potentially knockout blow.

Then three years ago, when he was in the best physical shape of his life — hiking or biking everyday — adversity pounced on him like an angry tiger. While at his Stanford business school’s 25th reunion, he went hiking up a hill and started getting more and more tired. Thinking he just wasn’t in as good of shape as he thought, he continued to push himself. He went on a bike ride the next day near Palo Alto, borrowing a bike to ride in true Stanford MBA style. Cofiño was surprised that it was harder for him to pedal as he got to the top, and he blamed it on the borrowed bike. He came to an incline and couldn’t pedal anymore. He climbed off the bike, put his left foot out and fell right on his butt. His leg didn’t work at all.

When he got home, a friend told him to go to a neurologist. He did. The diagnosis came back: ALS. Cofiño’s online research told him his disease is terminal without treatment or cure. He found that, on average, people die between three to five years of diagnosis. Some after six months. A few, like Stephen Hawking, live for 50 years after diagnosis.

The realization was too much. Cofiño and his partner, Ben Trust, escaped to Savannah, and cried the entire weekend. Determined to find opportunity in the latest adversity, they decided to find clinical trials to take power from the disease. They had no idea how clinical trials worked, but they knew they had to do something.

Clearly, there is no greater adversity than being told you have a limited amount of time to live. You’re done. The bullet has been fired; it just hasn’t hit you yet. Cofiño remembers that when he got the call with his diagnosis, he put the phone down and told Trust, “I’m sorry — we were supposed to grow old together.”

Modern-day science fiction at work.

About a year ago, Cofiño was at a fundraiser for the ALS Therapy Development Institute when he met Dr. Stephen Perrin, CEO and chief research officer. Perrin told Cofiño they were going to launch research that sounded like science fiction to Cofiño. They were taking blood from ALS patients to map their genome; then taking a skin sample to create a clean line of stem cells to produce different nerve cells against which they would test thousands of chemicals and medicines to see if any of them would slow down or reverse whatever is causing the individual’s ALS. Perrin explained if they find something, they can actually perform a clinical trial for Cofiño with protocol and tests.

All this was very exciting. Even more exciting was that if the scientists conducting the Precision Medicine Program find something that works, the genetic makeup starts to create a database with genetic markers that might match other patients. Cofiño beams as he describes how the magic of science might actually unlock the mystery of this disease. And he jokes that no mice were hurt in the making of that trial.

“Even though so many opportunities came my way out of adversity,” Cofiño declares, “ I always felt there was something missing ... until my diagnosis three years ago. I immediately knew what was missing — a sense of purpose. I thought my reason for living would be about earning lots of money or a having big house or having a prestigious degree or being president of a major company. I consider myself a lucky person. Most people go their entire lives without a clear sense of purpose, without knowing where they can make a mark. I have that now. It all goes back to adversity bringing opportunities. We all have a choice of how to take advantage of opportunities that are presented to us. Seeing opportunities in the midst of adversity has the potential to change anyone’s life from a worst nightmare to a highest calling.”

Cofiño’s message gives hope to thousands.

Cofiño founded Beyond ALS with two meanings. First, don’t look at me as the disease because there’s a lot more there; and secondly, let’s all work toward a time when someone diagnosed with ALS is no longer gripped by the fear that they’ve been given a death sentence.

By now, you can see why I am so impressed with this incredible human being. Everyone who meets Cofiño has the same question: How can he be so positive in the face of such adversity? If you want to hear Cofiño deliver his powerful message in person, visit his website and watch his personal video and then invite him to speak to your next Rotary meeting or professional group. You can also donate to ALS research at his website.

Biographical Information for José Cofiño

Cofiño, a seasoned franchising executive and successful entrepreneur and business leader, has turned to consulting and investing in emerging companies. To date, clients have come from the technology, entertainment, retail, hospitality and restaurant fields, among others. He specializes in helping entrepreneurs grow their businesses by developing brands, processes and systems that are scalable, consistent with their concept’s core identity. A particular area of focus is franchising, where clients have included H&R Block and KFC.

Before this, Cofiño was president and COO of ADIR Restaurants Corp., where he was charged with leading the master franchise for Pollo Campero, the phenomenally successful Central American brand.

A results-driven corporate leader, Cofiño was vice president of the Disneyland Resort, responsible for the development of the operational aspects for Downtown Disney, a 300,000-square-foot retail, dining and entertainment complex in Anaheim.

Cofiño developed expertise in all aspects of successful franchising and operations of brands as an executive at PepsiCo. As president of PepsiCo Restaurants International in Brazil, he planned and executed a complete turnaround plan resulting in increased sales in the KFC and Pizza Hut brands by 35 percent, leading to a commitment by franchisees to resume development. He had several executive positions at the Taco Bell division of PepsiCo, including vice president of the Northeast Zone where he was responsible for the operation of 500 restaurants representing $400 million in revenue; vice president of Taco Bell Express where he led the development and expansion of nontraditional licensed outlets systemwide; and vice president of the GoldenWest Zone where he expanded the region from 180 to 320 points of distribution while increasing same-store sales by 25 percent. He has also held leadership positions at Holiday Corp. in the Harrah’s and Holiday Inn brands in Reno, Memphis, San Antonio and Los Angeles.

Cofiño served on the board of directors of the International Franchise Association and on the board of the IFA’s Diversity Institute. He attained a Certified Franchising Executive (CFE) qualification. He is past member of the board of directors for the California Mentor Foundation, and the past chairman of the Board of Athletes and Entertainers for Kids.

Drawing on his experience, Cofiño has spoken nationwide on topics such as minority franchising and expansion of franchises internationally, Service Excellence, and the connection between personal goals and professional achievement. He has been featured in a number of magazine articles, including the cover story in Franchise Times (June 2008).

Cofiño was born in Cuba, raised in Mexico City, and immigrated to the United States in 1968. He earned a bachelor of science degree in international economics from the Georgetown University School of Foreign Service and an MBA from Stanford University. He speaks Spanish and Portuguese fluently. He resides in Santa Barbara.

— Dr. Cynder Sinclair is a consultant to nonprofits and founder and CEO of Nonprofit Kinect. She has been successfully leading nonprofits for 30 years and holds a doctorate in organizational management. To read her blog, click here. To read her previous articles, click here. She can be contacted at 805.689.2137 or .(JavaScript must be enabled to view this email address). The opinions expressed are her own.

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