by Barry Zoob
Editor’s note: Barry Zoob is the Chairman Emeritus of the Cystic Fibrosis Foundation, Nebraska Chapter. Eight years ago, he received the Lifetime Achievement Award.
In 1975, I decided that I wanted to make a difference for children with health issues. I joined the United Cerebral Palsy Board. Back then, fundraising was done primarily through direct mail and through national telethons. So I manned a phone bank during my initial telethon.
The first year it was fun as a lot of my friends called; after the second year, I found the effort less meaningful and decided to seek another option. My CFO was on the Cystic Fibrosis Foundation Board and suggested I meet with them. What I learned is they raised their funds through event fundraising, which was revolutionary at that time. I also learned this disease was a “death sentence” for kids with CF as the average life expectancy was 12 years old.
They immediately had my heart and my attention. In 1977 I joined the Nebraska Chapter of The Cystic Fibrosis Foundation’s Board of Directors and was able to immediately make a difference.
Cystic Fibrosis is a genetically-inherited disease, which affects approximately 30,000 people in the US and 65,000 people worldwide. There is no cure. In 1981, our son was born and after a few months he had a number of the symptoms of a CF child. He was having trouble breathing as well as difficulty retaining his nutrients. We called the CF care center and had him tested and fortunately, Jonathan tested negative.
Approximately three years later, I received a call from my sister Barb who said her daughter Lindsay, at age 6 months, has similar symptoms as our son had experienced, and she was frantic as she had read up on the disease. I encouraged her to have Lindsay tested and assured her that we had no family (genetic) history of the disease. After all, Jonathan tested negative, and I was confident Lindsay did not have CF.
Unfortunately, my confidence was shattered when Barb called me back and told me Lindsay did indeed have Cystic Fibrosis. The disease is caused by a defective gene which does not permit the normal flow of chloride through your cell channel. A sticky mucous builds up in the lungs and becomes a haven for bacteria. Eventually, this causes lung deterioration. CF also attacks the digestive tract and the mucous prevents nutrients from being absorbed, resulting in excessive bowel movements or bowel obstructions.
There are many other side effects, and there are over 1,500 different mutations of the disease. With such a small population affected by CF, it was impossible for the Cystic Fibrosis Foundation to engage Big Pharma in drug development. We were losing kids before they finished high school, and that is obviously not the order of life. It is simply unacceptable.
The CF foundation set off on a mission to take control of drug discovery, and its sole mission is to find a cure or a control for cystic fibrosis. Ninety percent of all monies raised goes directly towards research. The CF Foundation partners with biotech companies in drug development funding early phase trials and requiring the biotech company to fund final Phase III trial. If that final trial provides the desired medical benefits, they apply to the FDA for drug approval.
In 2012, Kalydeco was approved by the FDA. It is the first drug in history for any genetic disease that actually treats the basic genetic defect. Lindsay took part in this drug trial, as her mutation was benefited by this compound. Lindsay, prior to being on Kalydeco, could not climb a staircase without gasping for air. Today she is running marathons and teaching spin classes. It is truly a miracle.
Had I not been introduced to the CF Foundation after my stint on the UCP board, Lindsay may not be alive and as vibrant today, nor would my life have been changed by this decision.
Over four decades, my work has taught me two valuable lessons. The first one is: never be defined by the challenges you face, but rather be defined by how you face those challenges. CF kids tend to make their mark in life at an earlier age than their peers because they do not know how long they will have life.
The second lesson is: there is nothing more important than the moment we are in right now, so make this moment memorable. If we do that consistently, each of life’s moments are memorable, and you will live a full and complete life.
To date, the CF Foundation has brought two drugs to market which treat the basic defect of the disease. In addition to the aforementioned Kalydeco, Orkambi was approved by the FDA on July 2, 2015. This drug impacts 50% of the CF population. No other therapeutic has been developed or brought to market that treats the basic defect of any other genetically inherited disease.
There is a strong genetic link between cystic fibrosis and Ashkenazi Jews. The CF Foundation in Nebraska raises more money per patient than is raised for any other disease in the State.
While my initial involvement was to give back, it obviously became quite personal. That being said, I have met so many CF patients and their families over the years, held a child in their final hours of life, have seen the incredible breakthroughs in medicine, and my work is now a part of who I am and my legacy. In 39 years, I have raised over $5 million for CF research. But more importantly, my work has changed who I am and how I view how precious life is.
My wife Nora and I annually present the Barry Zoob Breath of Life Award to a volunteer who has made a difference and impacted the cure or control for cystic fibrosis but who has also made a difference in our community as a whole. The award is in its 5th year. The community needs to know that with their continued financial support, we will cross the finish line and CF will then stand for “Cure Found.” I believe this will occur in less than a decade. The average life expectancy is now 42 and increasing annually.
As Jews, we are taught at a very young age the importance of giving Tzedakah. Tzedakah is an obligation of goodwill and a marker of generosity. As my wife says: “To give is to get.” You get so much more by caring and helping others. This is certainly demonstrated by what I have learned from my work with Cystic Fibrosis. All of our children are involved in charitable causes in their local communities, and even our grandchildren have participated in raising money or volunteering for causes which are important to them.
The world is bigger than our religion, Israel and our Jewish beliefs. I believe we are all placed on this earth to make it better for our children, our grandchildren and future generations. The more ways we can effect positive change, change we can see through philanthropy and volunteerism, the more rewarding one’s life can be. Today is the most important day in our lives. As the quote goes: Yesterday is History, Tomorrow a Mystery, Today is a Gift, That’s why it’s called the Present.