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 June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.