As you may or may not know, our wonderful son Oliver was born with an inherited genetic condition called Cystic Fibrosis (CF). While he is currently doing very well, the disease does make every day a bit more challenging than normal, and unfortunately, is also currently a terminal illness without any cure.
The good news is that, due to organizations such as the Cystic Fibrosis Foundation, along with extremely motivated medical professionals, scientists, and related research groups, the average predicted life-span for someone born with CF has increased from what was once only several years, to 44 years (and gaining).
Every day seems to yield new insight into the mechanisms behind the disease, as well as new ideas about how to best deal with it. There are many new advances that look to add not just "time to the clock", but also significant "quality of life" improvements as well. Of course, on top of these improvements in treatment, there is also the constant and increasingly optimistic search for a complete and total cure.
In fact, Oliver is now on a promising new medication, called Trikafta, which addresses root issues of CF (at a cellular level), rather than simply help alleviate symptoms.
We’re still “cautiously optimistic” about what kinds of benefit Oli might see from this new medication, but it’s an exciting, and promising step in the right direction. It’s also one born directly from the support of the Cystic Fibrosis Foundation, and as such, serves as a tangible and personal example of the impact the financial support received from events such as Great Strides can have.
Another reason we’d really appreciate your considering donating to CFF is that they are tireless and influential advocates for the medical rights of CF patients such as Oli. With the current uncertainty surrounding our national healthcare system, it’s reassuring to see them active and advocating for the medical security of those with “preexisting conditions”, as Oliver’s CF is currently listed.
We will be supporting the Cystic Fibrosis Foundation virtually on May 15th, for their annual "Great Strides" event, and we would greatly appreciate if you could join along, and/or help us achieve our fundraising goal.
We understand and appreciate that not everyone is able to contribute financially, so while no amount is expected, anything and everything is greatly appreciated. Even the smallest contribution can be given with pride, knowing that it goes not only toward helping Oliver, but the thousands of other deserving individuals with CF as well.
Again, nothing is expected, but everything is appreciated. Just knowing you'll keep Oli and our family in mind that day would be welcome support in itself.
If you'd like to know more about cystic fibrosis, cff.org has some approachable, yet very informative resources. We're happy to answer any questions you might have as well.
With much love and appreciation,
Britt, Noelle, Evelyn, and Oliver