He did it!!! Ethan survived his first year of college (well almost, he has 3 more weeks to go). Living on his own for the first time, being disciplined to keep doing his treatments every day, managing all of his medications, all while taking a full course load and excelling in his classes. We couldn't be prouder or more happy for him that he has reached this monumental milestone.
If someone had told us when Ethan was diagnosed during pre-school that by the time he went to college he’d not only be beating his cystic fibrosis but be flourishing, we would have been so relieved and ecstatic. Ethan is living proof that as time marches on we are witnessing amazing medical advances that have the potential to change the face of cystic fibrosis (CF).
As many of you know, Ethan was diagnosed with CF sixteen years ago at the age of 3. Now, a decade and a half later and after just celebrating his 19th birthday, he is thriving despite his life-changing diagnosis. We owe this to all of the remarkable developments the CF Foundation and medical community have made in their quest to find a cure for CF.
Exciting news was just announced about a new "triple combination" therapy being studied in clinical trials. The combination of VX-445 and tezacaftor/ivacaftor showed positive results in two large late-stage trials. Participants with the same CF mutation as Ethan's showed a 10 percent improvement in lung function after only 28 days. This is significant progress as lung function is expected to decline 1-3% each year for CF patients. To reverse and over-correct the expected lung function decline would be a huge step in the right direction of curtailing the destructive effects of CF. It is expected that the FDA will “fast track” approval of this new drug and the hope is that it will become available for use either by the end of this year or early 2020.
Yet another drug to add to Ethan’s arsenal of fighting CF! Bottom line, there is much research going on and much to be excited for in terms of new treatments targeted at the root cause, eventually leading to the CURE!
You can learn more about this exciting new development by copying the following website address into your browser:
Check out all the other potential life-changing treatments in the CF pipeline by visiting this page: https://www.cff.org/trials/pipeline.
For those of you not familiar with the demands CF requires of Ethan, please read further. His daily regimen consists of 3-4 breathing treatments in which he inhales aerosolized medications, vigorous chest physical therapy two times a day, enzyme capsules before every meal and snack to help his body absorb vital nutrients, laxative to help his digestive system function properly, and highly concentrated multi-vitamins. He takes about 30 pills every day to maintain his health. All in all his treatments take about one hour each and every day. Fortunately, he hasn’t landed in the hospital with a lung infection, and we hope that will be the case for a very, very long time (hopefully never!). (Note: the last sentence has been in our annual CF letter since Day 1; we hope it never has to be edited out!)
The demands of staying on top of the disease are many and time consuming, but Ethan understands the importance of doing his treatments day in and day out in order to stay healthy so he can continue doing the things he loves: playing bass and writing songs with his band, going to the gym, lifting weights, hanging out with friends, and now, working towards his college degree with a major in business at San Diego State University.
When the CF Foundation was founded in the 1950s, children with CF were not expected to see their first day of elementary school. When Ethan was diagnosed in 2003 the median life expectancy was in the early 30s. Today, life expectancy is in the early 40s. We hope that by the time Ethan is 40, the life expectancy will be 60, and that the disease never “catches up with him.”
Please consider donating to the Cystic Fibrosis Foundation (CFF) and their annual GREAT STRIDES walk to help us get closer to finding a cure for CF. GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year Ethan will be represented by “Team Ethan” at the GREAT STRIDES Walk in Walnut Creek on Saturday, April 27th.
Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.
Making a donation is easy and secure! Just click the "Donate" button on this page to make a donation that will be credited to our team. Any amount you can donate is greatly appreciated!
Together, we can make a difference in the lives of those with CF. Thank you for supporting the mission of the CF Foundation and Great Strides!
On behalf of Ethan and the thousands of individuals fighting CF every day, thank you for your support.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.