BENEFITING: CYSTIC FIBROSIS FOUNDATION
ORGANIZER: CYSTIC FIBROSIS FOUNDATION
EVENT: 2013 Boston Marathon
EVENT DATE: Apr 15, 2013
I am writing to ask for your financial support for my 2013 Boston Marathon Run to benefit the Cystic Fibrosis Foundation. I ran my first marathon back in 2011 for CF and I remember saying that it would be my last. Well, here I am again. With the support of my husband Bob, my three beautiful girls and my good friend Julie, I am going to give it another try. Julie and I will both be running for Team CF. As all of you know, my 14 year old daughter Megan has Cystic Fibrosis. She spends a lot of time focusing on her health, taking over 40 medications a day and performing daily chest physical therapy along with inhaled breathing treatments. A good portion of Megan's life is spent doing countless hours of therapies, going to doctor’s appointments and hospital stays, but her positive outlook on life and fun personality hide any hint of struggles that she may face. As her mother, I am inspired by her acceptance of her life, she doesn’t complain very often and for the most part does everything we ask of her. With that said, she has again motivated me to train and run 26.2 miles on her behalf and help raise important funding for CF research and patient care.
Although the lifespan of people living with CF has been on the rise and the need for additional adult clinics is becoming more common, there are still to many lives claimed by this devastating disease. As much as we would like to freeze time so Megan can be with us forever, we want her dreams to come true. We want to see her graduate from high school, go to college, grow-up and follow her dreams.
There are new drugs in the CF pipeline that are generating great results. The FDA recently approved Kalydeco which is one pill a day and is making a tremendous difference in patients' lives. Unfortunately this drug only works for only 4% of the CF population and does not apply to Megan’s gene type. The next drug being developed in the Kalydeco family of medicine is currently in phase 3 trials and holds the potential to help 90% of the CF population - including Megan. While these drugs are not a cure all for CF, they provide a viable treatment that increases lung function, helps increase weight gain and will hopefully increase the lifespan of people living with CF.
With continued funding and your generous support, the Cystic Fibrosis Foundation will change the lives of people living with CF. I would greatly appreciate your support for my 2013 marathon run. It is not only inspiring, but extremely motivation knowing that so many people care for Megan and are willing to help find a cure for CF.