Dear Family & Friends,
Spring is in the air! and the time of year when we ask for your support of Justin and Ross in their battle against CF.
To say that this past year has been encouraging is an understatement. One year ago Justin was hospitalized due to very low lung function. In August, he secured a spot in a clinical research trial for a new triple combination of drugs for CF. Within weeks, Justin stopped coughing and his lung function rose signficantly. We were in disbelief. He had to come off of the drug due to some complications but fortunately was able to resume in October. He continues to feel so much better and is breathing much easier. The triple combination medication study has shown great efficacy and safety and will go to the FDA for approval this year. Once the FDA approves it this year and it becomes available to patients, Ross will be able to take it. We cannot wait for this day to come as Ross's health has been very unsteady this year with dramatic fluctuations in his lung function.
As parents of two children with CF, we cannot begin to tell you how we've prayed for this promising drug to come to fruition. To see Justin feel well, have a "pep in his step" (as I describe it) and to be breathing easier is the best feeling a parent can have and we can't wait for Ross to have this same experience. It is due to your ongoing generosity and support, that this research was funded! Thank you from the bottom of our hearts.
You may have heard about a new movie being released in March, called "FIVE FEET APART." This movie portrays the hardship and struggle of two young adults with CF and sadly, the fact that CF is a socially isolating disease. Individuals with CF must maintain a distance from each other to avoid the exhange of infectious bacteria from one person's lungs to the other person's lungs. People often ask us how we've managed this since Justin and Ross are siblings. The answer is: as normally as we could. When they were young children, we made sure they didn't share toys, utensils, cups or anything for that matter. They could never sleep together and we always separated them in hotel rooms, on airplanes, in the playground, etc but always made sure that it was never obvious. Children should be children and not have such worries. When they became adolescents, we had to educate them about keeping distance from others with CF at school requiring separate classrooms, on sports teams, during recreational activities and while at Children's Hospital. Hand sanitizer is a part of our lives, all day, every day and continues to be, to prevent germs from getting in their lungs.
We are eager to see the film and hope that you may try to see it also. The Great Strides Walk is on May 18th at the Youth Center in North Andover and our very own Hackers for Hope Golf Tourney is on June 24th. Please save the dates. All proceeds benefit the CF Foundation and are bringing tomorrows to our children and all those with CF.
Thank you for your generosity and kindness !! UNTIL WE ARE DONE and until CF stands for CURE FOUND!
With gratitude, the Myerson Family (Joel, Kim, Justin, Michaela & Ross)