Every year at this time we like to share with you the progress on research to cure Cystic Fibrosis and what this means for life with Jude—and to ask you for support.
We write this year with an enormous amount of hope, perhaps more than we have ever had about the progress that Jude is making and the remarkable strides in medicine.
Yesterday I had the incredible privilege of hearing from Dr. Robert Beall, the visionary long-time leader of the Cystic Fibrosis Foundation (CFF). He walked through the amazing trajectory of change since the CFF was founded, and since he started there in the early 1980’s.
Perhaps the most important number is the median predicted survival age of people with CF. In 1986, it was 28 years old. Today, it is 45, and the trajectory is moving rapidly in the right direction. He talked about how in the early days they really were only creating children’s care centers across the nation. Now, with so many people living so much longer with the disease, adult care centers are popping up to meet the needs of the growing number of people living longer, better lives.
Jude is one of those many kids living a healthier life because of the amazing work of the Cystic Fibrosis Foundation. His health is fantastic, and the doctors and nurses and dieticians and others at Seattle Children’s that are his team are thrilled with his progress.
Jude is a wonderful kid. He is almost always in a good mood and happy. In the past year, his interests continued to change. Like many kids, his passions have shifted over time from Thomas the Train to Legos to sports and video games. He now loves watching sports of all kinds, crazy videos on YouTube, and playing video games on his own and with his friends.
He is incredibly active with sports, which is vital to keeping his lungs moving. He just wrapped up his basketball season, and is now beginning to play his new passion, ultimate Frisbee. After 7 years, he has decided to hang up his cleats and end his illustrious baseball career.
Jude is healthy in large part because of the ground-breaking work of the Cystic Fibrosis Foundation. They defines CF like this- Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
As people who have spent our entire professional careers working in the public interest, we know a lot about philanthropy and non-profits. There is no doubt that the CF Foundation is one of the most effective we have ever seen. The main reason why they are so effective is they have developed an innovative approach to finding a cure that is the envy of the medical community. CF impacts a relatively few number of people, roughly 30,000 people in the United States. Because of that, most pharmaceutical companies are not willing to invest the enormous amount of money it takes to develop new drugs for such a small population.
So many years ago the CF Foundation realized that they needed to develop a new approach, a venture philanthropy model, for drug development. The Foundation bundles the money that they raise from people like you and us, and build partnerships with drug companies, investing many tens of millions of dollars to find breakthrough drugs.
These groundbreaking partnerships have put the CF Foundation on the brink of a massive victory in the development of a new drug. If the results of the next phase of clinical trials show results similar to the early phases, we are talking about a game changing breakthrough. It’s not a cure. But what it means is that Jude will essentially be able to take this new pill, in combination with the other treatments that he already does every day (vibrating vest for 40 minutes; 3 separate inhaled drugs; and enzymes each meal to help with his digestion), and live essentially a normal healthy life.
Instead of taking the drugs that he takes now to fight off what would be inevitable- lung disease that would likely lead to lots of trips to the hospital, possible lung replacement surgery, and ultimately a death much too young- this new drug offers the promise of sustained chronic treatment that will keep his lungs functioning at pretty darn close to how most people’s lungs function.
While I am full of hope as never before, I am tempering my enthusiasm until this drug gets approved by the FDA. You never know how things will progress from the early stages it is in until final approval. But I do know that Jude’s doctors are more upbeat about this than anything in the 10 years we have been going to the CF clinic.
We love the Cystic Fibrosis Foundation. They are an incredible organization that is making Jude’s life so much better. Because of them, we have real hope that Jude can live a long, healthy life. And so can tens of thousands of other people. They are amazing, and we could not be more happy to work to raise awareness about the disease and raise money for their work.
If you would like to make a contribution to the CF Foundation, you can do it here.
Thank you so much for your support of Jude, the CF Foundation and our entire family.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.