Almost two and a half years after starting on the CF Modulator Trikafta, my lung function remains stable and my health is good. For the 90% of CF Adults who have started taking Trikafta, hospitalizations are down and life, in regards to CF, is better and definitely more hopeful.
Trikafta is not a cure, it is only the beginning. Your support is still needed. The CF Foundation is in this for the long run, to find treatments for the entire community and to ultimately a cure. I am confident that we will find a cure with your help. Thank you for continuing to be a part of the team.
Here are my updates from the last two years:
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.
On October 21, 2019, less than two years after my participation in the clinical trial, Trikafta was fully approved by the FDA. 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%.
At my first in person visit since the pandemic, in August 2021, my lung function continued to increase and once again, 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 for being part of this history making process.
I consider myself lucky. I am a husband, a stepfather and a full time engineer working for Stellantis (formerly FCA US LLC). My wife and I moved into a new house in the summer of 2020. Our daughter is applying to schools to further her education in the clinical psychology field and our son moved from Connecticut to North Carolina with Biotronik. We both work full time, remotely for the last two years. 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 so good.
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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.