Hello again,
It’s that time of the year when we once again reach out to our friends and family to help support us in our quest to find an end to cystic fibrosis. Each year, our family walks in Great Strides, the Cystic Fibrosis Foundation’s 5K Walk-A Thon, in support of our son, Jacob, now nine-years-old, and all people who suffer from this life threatening illness.
As you may know, Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Because of the illness Jacob, must sit through at least two daily breathing treatments and take an assortment of oral medications, including enzyme pills with each meal.
We’ve been blessed that Jacob continues to do well. However, that doesn’t mean there haven’t been challenges. Over the past nine months Jacob has had a pretty significant drop in his lung function. Through a change in some of his medications and a lot of hard work he’s gained back some ground, but he’s still at about a 12% loss. Although it has been difficult at times, we’re so hopeful about what the future holds.
As we speak, some very exciting new drugs that are coming through the pipeline. One in particular, VX-770, just finished phase 3 clinical trials with extremely positive results. This drug is for a certain mutation of CF that Jacob unfortunately doesn’t have but it opens the possibilities for other medications. Another, VX-890, is in phase 2 trials and also looks very promising. (Jacob thinks these drugs sound like secret agent names!) Using these two drugs in combination could benefit almost 90% of those with cystic fibrosis, including Jacob. They don’t just treat the symptoms; they actually correct the basic defect of the CF gene!
As you can imagine, news of these medications has ignited a new sense of urgency through the CF community. An even deeper determination has set in to do whatever it takes to get these medications to our loved ones affected by this terrible disease.
Now, more than ever, it’s absolutely vital that we continue our fundraising efforts. It takes a great deal of money to get a medication through clinical trials and FDA approval. To see this type of treatment on the horizon and not be able to reach it because there isn’t enough funding would be devastating.
This year’s Great Strides will take place on April 9th in our hometown of Valencia. We would love for you to join us if you’re able. You can also support us by going to our webpage and donating to this amazing cause. Simply click to donate! You may also Please know that ANY AMOUNT is appreciated more than we can fully express.
Thank you for continuing to support Team Jacob and The Cystic Fibrosis Foundation!
Sincerely,
Scott, Julie, Sophie and Jacob
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