As some of you might recall, I had the good fortune recently to be able to team up with some of my favorite bloggers to try and help raise money for cystic fibrosis research. Our fundraising choice was not accidental; as you also might recall, our friend and fellow writer, Scott Malchus, has a son (pictured above) who was born with CF, and Scott will be participating in a benefit walk next month. Our goal is to help him raise a bunch of money for that walk, and to that end, we have lined up a fairly impressive array of prizes from singers, authors, and personal collections to try and encourage donations. We kicked off our efforts at the beginning of April, with the debut of Bloggers for a Cure. Clicking on that link Á¢€” or on the animated image you see on my right-hand sidebar Á¢€” will take you to a list of said prizes, as well as a handy-dandy donation link. Having donated myself, I can tell you it takes less than five minutes.
At this point, we have more prizes than donors, which bothers the hell out of me, but we’ve still got plenty of time to change that. I intend to make like a PBS pledge drive this month, and browbeat as many of you as possible into making a difference. Along those lines, there will be no Cutouts Gone Wild! today; instead, I’m yielding the floor to Scott. Take it away, brother Malchus:
Dear friends and families,
It’s hard to believe that this will be our sixth year participating in the Cystic Fibrosis Foundation’s Great Strides Walk. It seems like only yesterday that we began reaching out to all of you as we began our battle against cystic fibrosis (CF). In 2002, Jacob was just a few months old as Julie carried him in the front pack on our first Great Strides Walk. Now, as an active 5 year old, Jacob will zip alongside big sister, Sophie, on his scooter at this year’s Great Strides on June 2 in Valencia, CA.
This has been an exciting year for Jacob. He began preschool, which he loves, in particularly because he’s at the same school as Sophie. In class, Jacob has been a brave boy, handling the questions and curious looks of his classmates when he takes his enzymes at snack time. Early on in the year, Jacob stood in front of the class and, with the help of his teacher, told them he has CF and why he has to take enzymes. We all know that he must take enzymes before each meal or snack so that his body can absorb the nutrients and fat from the food. Jacob explained that he takes them so he doesn’t get a stomachache. Standing alone in front of his friends at a young age not only showed real courage, but it also told his friends that CF doesn’t mean he should be treated differently. To top that off, Jake brought in his Vest (the vibrating machine that shakes lose thick mucus in his lungs) for a recent show and tell. He has also recently taught himself how to swallow pills. This is a huge deal for him since some of the liquid medication taste pretty bad.
CF affects everyone in the family. As parents, the daily routine of 13 different medications can sometimes get overwhelming. We are blessed that Sophie, 8, is such a caring and observant big sister. Sophie loves her little brother so dearly that she keeps us on our toes, at times reminding us when he needs enzymes or if we overlooked one of his other medications. Sophie recently saw an empty box from one of Jacob’s medication on the counter. Sophie asked Julie in a worried voice if Jacob was out of Pulmozyme. We were blown away that Sophie was not only keeping track of his medication supply but actually knew the name of the medicine. These two have such a special bond. As Sophie matures, the day will come when she has questions about CF. As some point she’ll probably come across statistics and the facts about the disease.
When that day does come, we will tell her that yes, those statistics are true. But there is hope. Since the year Jacob was born, the median age has risen from 32 to almost 37 years of age! And ever since the CF gene was discovered in the late 1980’s, scientists he been developing new, more powerful medications and treatments. As a result, people with cystic fibrosis are living longer, healthier lives.
What this means is that all of this fundraising is working! We are making a difference! But I’m sure we will all agree it is still not good enough. It will not be good enough until CF stands for CURE FOUND.
On June 2nd, we will once again be walking in the Great Strides walk. We are reaching out to you for your support by asking you for a donation to the Cystic Fibrosis Foundation. There two ways you can make a tax deductible donation:
Write a check to the Cystic Fibrosis Foundation and send it to this address:
22331 Los Tigres Dr.
Saugus, CA 91350
Together we are making a difference; and together we will find a cure for cystic fibrosis.
From the bottoms of our hearts, we thank you for you kindness and generosity.
All the best,
Scott & Julie Malchus