Jenica Leo
It's been a great year for Ellie as she declared her Econ and Poli Sci majors, finished her sophomore year of college, and just started her summer job interning at the State House in Boston.
In health news, Ellie's lung function continues to be mostly stable, which is amazing and wonderful! She had a lung exacerbation early in the fall that required a couple rounds of antibiotics to finally kick, but it was a great reminder that colds leading to lung infections are so much fewer and farther between since she started taking Trikafta.
A new modulator drug was approved in December of last year that is taken just once a day, and may have fewer side effects for patients. Ellie was recently enrolled in a study that will delve deeper into this, and began her first dose two weeks ago. I'm encouraged that this may be another gain for her and many others!
With all of this positive information, I think it's very valid to ask, why are we still fundraising? Why are we still chasing a cure when we've already made these massive life-extending gains?
Two reasons: the first is that these modulator drugs are life-EXTENDING. They have pushed life expectancy for babies born today to 61, which is literally double the life expectancy for babies born in 2005 like Ellie. We can celebrate 61 years old, we SHOULD celebrate 61 years old, but there is a lot of life to live beyond 61 years, and I want all CF patients to have the opportunity to retire, enjoy grandkids, discover all of the blessings that come in your 60s and beyond.
The second reason we continue advocacy work and fundraising is that there remains 10% of CF patients with mutations that do not benefit from a modulator drug. As a mom whose daughter has been taking a modulator for the last five years, I'm relieved and so grateful it is available to Ellie. But I know other moms, I've become friends with other moms, whose son or daughter still has nothing. They are watching lung functions decline each year and are desperate for the stop-gap modulators provide.
Our family continues fundraising for these reasons, and we do it gladly, seeing how money buys research, research leads to medications, and medications add years.
Abby will spend her summer at Case Western in a lab doing research for CF, which is just the most incredible full circle thing. Jon, Ellie and I will be driving her car out to her to help to move in the weekend of our hike, and as sad as I am to miss my favorite event of the year, I would be more sad missing Abby! So in an attempt to suffer greatly along with my hike friends, I'll be spending this coming weekend walking 40 miles in 40 hours. What I’ll miss in elevation I’ll gain in total mileage!
In health news, Ellie's lung function continues to be mostly stable, which is amazing and wonderful! She had a lung exacerbation early in the fall that required a couple rounds of antibiotics to finally kick, but it was a great reminder that colds leading to lung infections are so much fewer and farther between since she started taking Trikafta.
A new modulator drug was approved in December of last year that is taken just once a day, and may have fewer side effects for patients. Ellie was recently enrolled in a study that will delve deeper into this, and began her first dose two weeks ago. I'm encouraged that this may be another gain for her and many others!
With all of this positive information, I think it's very valid to ask, why are we still fundraising? Why are we still chasing a cure when we've already made these massive life-extending gains?
Two reasons: the first is that these modulator drugs are life-EXTENDING. They have pushed life expectancy for babies born today to 61, which is literally double the life expectancy for babies born in 2005 like Ellie. We can celebrate 61 years old, we SHOULD celebrate 61 years old, but there is a lot of life to live beyond 61 years, and I want all CF patients to have the opportunity to retire, enjoy grandkids, discover all of the blessings that come in your 60s and beyond.
The second reason we continue advocacy work and fundraising is that there remains 10% of CF patients with mutations that do not benefit from a modulator drug. As a mom whose daughter has been taking a modulator for the last five years, I'm relieved and so grateful it is available to Ellie. But I know other moms, I've become friends with other moms, whose son or daughter still has nothing. They are watching lung functions decline each year and are desperate for the stop-gap modulators provide.
Our family continues fundraising for these reasons, and we do it gladly, seeing how money buys research, research leads to medications, and medications add years.
Abby will spend her summer at Case Western in a lab doing research for CF, which is just the most incredible full circle thing. Jon, Ellie and I will be driving her car out to her to help to move in the weekend of our hike, and as sad as I am to miss my favorite event of the year, I would be more sad missing Abby! So in an attempt to suffer greatly along with my hike friends, I'll be spending this coming weekend walking 40 miles in 40 hours. What I’ll miss in elevation I’ll gain in total mileage!
Thank you for investing in the science that is changing lives! I feel qualified to speak for the now 40,000 families of CF patients and say that we are all so, so grateful! Thank you so much!!
Jenica, Jonathan, Abby & Ellie
Jenica, Jonathan, Abby & Ellie
Comments