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Hello again,
It's hard to believe it, but this year our son, Jacob, is ten-years-old. Where did the time go? As the VIDEO below shows, Jacob has grown so much in his short life. 2012 also marks a decade of our family's quest to find an end to cystic fibrosis, the life threatening illness that Jacob has battled every day of his life. As we have done for the past ten years, our family will walk in Great Strides, the Cystic Fibrosis Foundation's 5K Walk-a-Thon, in support of Jacob and all people who suffer from CF.
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 chest therapy sessions each day and take an assortment of oral medications, including enzyme pills with each meal.
As his life has become busier with school, track, cross-country, or swimming, the treatments have become a bigger challenge. There are only so many hours in a day! However, Jacob rarely skips a treatment. His diligence pays off as his health continues to be strong. Still, the demands of the disease can be great. It's still a constant struggle to keep his lung function up, Jacob struggles to gain weight, and the emotional toll of having CF is difficult.
Recently, the CF Foundation made a remarkable announcement: The FDA approved the drug Kalydeco, a major advance in the search for a cure for CF. This drug restores the function of a defective protein in people with a certain CF mutation, about 12% of the CF population. Although Jacob does not have this particular mutation and does not benefit from this drug, we are still very hopeful. Researchers believe that the breakthrough of Kalydeco will eventually lead to new therapies that will benefit more people living with the disease.
This news, and the other promising medications in the pipeline, only increase the sense of urgency throughout the CF community. An end to this terrible disease is on the horizon. 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. As we've done for ten years, we come to you, our family and friends, reaching out to help us in fundraising for the CF Foundation.
This year our Great Strides walk takes place on May 5th in Valencia, CA. We would love for you to join us if you are able. You can also help make CF stand for CURE FOUND by making a donation to the Cystic Fibrosis Foundation. Simply click on the link below to donate.
If you prefer to mail a check you may send it to our home address. Please make checks payable to The Cystic Fibrosis Foundation.
22331 Los Tigres Dr. Saugus, CA 91350 Thank you for continuing to support Team Jacob and The Cystic Fibrosis Foundation!
Please know that ANY AMOUNT is greatly appreciated. If you are unable to walk or donate at this time we understand and ask for your prayers as we walk to put and end to cystic fibrosis.
Sincerely, Julie, Scott, Sophie and Jacob
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