‘Great Strides’ to Defeat Cystic Fibrosis

There was a time when I feared I would not see my daughter grow up — and now she is 31, and I am 61!

My cystic fibrosis was on the milder side, but the disease marched on as it does, despite having the most excellent care team led by Dr. Richard Belkin at the Santa Barbara Cystic Fibrosis Clinic. My airways have been damaged by infection. Arteries in my lungs became tortuous and fragile. At 58 I was listed for a double lung transplant.

But advances in research through the Cystic Fibrosis Foundation and dedication by hundreds of medical professionals serving the CF community have changed the short life expectancy CF was known for. Things have grown even more promising in recent years with stunning advances in genetically designed and powerfully effective medications for many CF patients.

At 59, a new ground-breaking drug called Trikafta changed my life. I am no longer actively listed for a transplant as the life-threatening bleeds have stopped for now. This drug came about through research funded by the generosity of people like those who participate in the Great Strides fundraiser. The medication is not a cure, but nonetheless it has changed the lives of many living with CF. Some like myself have advanced disease from which we cannot recover. Others see their symptoms much lessened.

Over 10 percent of those living with CF have mutations that do not respond to our new miracle drug. These CFers still have to clear infected gunk from their lungs daily and also live with serious gastrointestinal problems that don’t go away. Let’s not leave these CFers behind. We still have children, teens and young adults whose lives are shortened by CF. A solution cannot be too far away.

The cystic fibrosis foundation has been a cutting edge charitable/research force — funding their own research. They have become a model for other disease charities. A minimum of 90 percent of all donations go to research.

A cure for those who suffer and fight CF is on the horizon with research focused on Genetic Therapies. Let’s make CF stand for “Cure Found.”

The Great Strides Walk is a fund-raising event to provide continuing support for such research and takes place in Santa Barbara on November 12. For more information, please visit Santa Barbara Great Strides.