Dear Family and Friends,
I must admit that it feels a bit wrong to be asking for a Great Strides donation when all of our attention and concern is on COVID-19. So in an effort to justify my request (more for myself), here goes...
As I'm sure you're aware, the FDA approved a new treatment in October 2019 called Trikafta. This is the first "modulator" that Thomas has been eligible for. How does Trikafta work? All of us have CFTR proteins at the cell surface. In a "typical" person like you and me, there is a balance of salt and water that moves between our cell membranes. However, in a person with CF, the CFTR proteins are defective. The CFTR proteins do not allow for that balance of salt and water; thus, people with CF develop a sticky mucus in organs such as the lungs and pancreas. This can cause inflamation and bacteria to become trapped in the lungs, which may result in lung infections, and it prevents pancreatic enzymes from being released, thus causing malnutrition. Enter Trikafta. Trikafta treats and corrrects the underlying cause of CF - it "corrects" the CFTR protein that creates CF and, in doing so, allows chloride ions to move freely between the cell membranes, and this allows a balance of salt and water. As a result, the sticky mucus that typically develops in a person with CF does not, or at least not as much of it.
What has this meant for Thomas? Thankfully for Thomas, his lungs have always been remarkably healthy. Even so, the pesky dry cough he used to have is no more. Most of Thomas's symptoms have been centered on his pancreas and digestion. Since beginning Trikafta in November, he has gained 12+ pounds, his BMI is above the 50% for the first time in 3+ years, and his pulmonary function tests are off the charts, literally. What is just as noteable for me, however, is how his self-confidence has blossomed. Thomas feels and sees the difference Trikafta is making in his health. Because of this, he now takes his medication on his own initiative without being nagged by me; he now makes healthy food choices so that he can continue to gain weight and fill out; he nows works out regularly because he sees himself developing muscle and getting stronger; he now is more focused in school and is looking ahead to high school and even college. He now makes mature decisions about his health and well being (most of the time), like choosing not to work out at the school fitness center because it is too germy. And now, with all of this COVID-19 business, there is a level of cautious hopefulness that he will be ok, that given this moment in time, he can and will overcome this period of keeping to himself and hunkering down with his family and friends via social media.
The effects of Trikafta on Thomas - and our family as a whole - has been truly awesome. The fundraising we have been doing for the last 15 years has helped contribute to this outcome. For this, I give my heartfelt and most sincere thanks to you.
My only regret is that Trikafta does not treat all patients with CF. We have friends who are still waiting for their miracle drug in the hopes of their loved one becoming healthier and more whole. For them, and the CF Founcation's movement forward, I ask for your support in this year's (virtual) Great Strides. You can contribute in a few different ways...
1. You can make a donation to my Great Strides campaign. Great Strides is the CF Foundation's annual fundraising event. Every dollar raised is 100% tax deductible and goes directly toward funding research (not administrative costs). Remember, we are still working for a cure!
2. You can be a "virtual walker" with me and raise your own funds for the Cystic Fibrosis Foundation.
3. If #1 or #2 is not possible, you can remember Thomas, and all those living with CF, in a special way on May 17. It can be a powerful experience to know you are held in the thoughts and prayers of others. These have sustained our family during our joys and challenges.
Thank you so much for considering how you will participate in the 2020 Great Strides. These are certainly unprecedented times. It is easy to feel overwhelmed in the face of a pandemic. Maybe this is an opportunity to feel not so powerless.
Know my appreciation and my wish for health and peace to you at this time.
With love and gratitude,