In December of 2017 I started on a phase two clinical trial for a drug that I knew was going to be a game changer. Days into the trial, I was positive that the medication was working. My trial lasted only one month but it created an excitement that was hard to contain. I knew it might take a while to get full FDA approval but this new drug was coming and it was going to be awesome.
In the scheme of things, it happened quite fast. On October 21, 2019, less than two years later, Trikafta was fully approved by the FDA and my first dose was delivered to my home two weeks after that. At the end of January 2020, I went to my first doctor appointment after starting Trikafta and my lung function had increased 14%. Incredible. I am beyond psyched!
Here are my thoughts on the subject: - Trikafta is a great drug and it is going to help a lot of people (over 90% of the Cystic Fibrosis population can benefit from this medication). - Trikafta is not a cure and there is a lot more work to be done... which is why my fundraising continues. - This would not have happened without us... people spreading the word, raising money to support CFF and CFF supporting the right research companies at the right time.
It is truly exciting to be of a part of revolution... a worldwide quest to push the limits of science and medicine and, on the way to finding a cure, developing life altering treatments, like Trikafta, to make the world a better place for those living with CF. I cannot guess when a cure will be found but when we finally look back on this time and the process in which we are currently partaking, I am confident I will feel pride to have been an integral part of it. Thank you for joining me on this journey and making history.
I consider myself lucky. I am a husband, a stepfather and a full time engineer working for FCA US LLC. My wife and I like to travel, I enjoy playing tennis and I hit the gym at work every morning before I head up to my office. Yet some may not think I was so lucky. Diagnosed with CF at the age of two, I watched my younger brother struggle and ultimately lose his battle with CF at the age of 21, three years post lung transplant. I do up to six breathing treatments per day, take pills every time I eat and I have been on home IV antibiotics close to a dozen times. Every day I fight and so far, I have made it work.
I grew up in Connecticut, attended Lehigh University and studied mechanical engineering. After graduation, I became more involved with the CF Foundation, speaking and fundraising in Michigan and Indiana. I never thought I would be the one to discover the big treatment or cure for CF but I always knew I would be part of the process.
By leading a Great Strides team for over twenty years and participating in five clinical trials, I can say with conviction that I am making things happen. Yet none of these new drugs in the pipeline for CF, and there are fifty in the works right now, would exist without hundreds of walk teams and thousands of walkers across the country, like yourself, raising money to support their very existence. Not sure if you are making a difference? I will keep it simple. You are.
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.