BENEFITING: CYSTIC FIBROSIS FOUNDATION
ORGANIZER: CYSTIC FIBROSIS FOUNDATION
EVENT: Pittsburgh Marathon 2016
EVENT DATE: May 01, 2016
I am back to run the 2016 Pittsburgh Half Marathon with the Run to Cure CF team. Cystic Fibrosis hits close to home because my little cousin Aubrie has this terrible disease. Please consider making a donation, so hopefully one day, CF will stand for Cure Found. Here's Aubrie's story:
Aubrie was born on January 26, 2007 at Latrobe Area Hospital. Almost immediately after she was born, she was flown to Children’s Hospital of Pittsburgh of UPMC. Shortly after that, she had surgery to remove a blockage in her intestines and they had to put a colostomy bag on her. Aubrie spent the first month of her life in Children’s Hospital, and during this time, she was diagnosed Cystic Fibrosis. We were unfamiliar with this illness, and the doctor’s and other staff at Children’s Hospital spent a lot of time educating us on what Cystic Fibrosis is and the ongoing challenges that would be involved throughout Aubrie’s life. Several months later, Aubrie underwent a second surgery to have the colostomy bag removed.
In order to keep Aubrie as healthy as possible, she requires special care to meet her unique needs. She currently has chest therapy via a vibrating vest three times a day every day, for a half hour session at a time, in order to loosen the thick mucus from her lungs. Another challenge that Cystic Fibrosis presents is that the body isn’t able to absorb nutrients from food very well, which makes it difficult to maintain or gain weight. Because of this, Aubrie has to swallow 7 enzyme pills, several times a day, before she eats anything or drinks anything that is not a clear liquid. With this medicine alone, 8-year old Aubrie swallows 1,000 enzyme pills or more per month. In addition, she is on several other daily medicines. Aubrie currently weighs only around 37 pounds, as she has struggled with gaining weight since birth. The special team of doctor’s she sees on a regular basis are concerned with her lack of weight gain, as studies have shown that this could have a negative impact on her lung function and in turn could possibly decrease her life-span. Therefore, Aubrie had surgery July 2013, for a placement of a feeding tube (G-Tube) inserted in order to help her gain weight. Before the surgery, Aubrie was just to get the feeding tube overnight for extra nutrition and calories. As of now, the feeding tube runs continuously for 5 hours overnight and Aubrie gets 2 bolus feedings through a syringe. Once in the early morning and another after school.
Despite of all the daily medicines, chest therapy, and ongoing challenges that Cystic Fibrosis presents, we are happy to say that Aubrie is an enthusiastic and bright 8-year old girl. She is a third grader at Heritage Elementary, Franklin Regional School District. In addition, she is infatuated with horses and loves spending time with her family and friends.
My hope is that Aubrie’s story above gives you a hint of insight into the ongoing challenges that Cystic Fibrosis presents, and in turn inspires you to consider helping in our fight against this devastating illness.
CYSTIC FIBROSIS FOUNDATION wrote -
Help Us Find a Cure.
Our Run to Cure CF team in Pittsburgh continues to grow each year, as do our research efforts and the progress we’ve made in the search for a cure. Real progress toward a cure has been made, but the lives of young people are still cut far too short. Won’t you join us in continuing the search for a cure? Accept the challenge today and help add tomorrows to the lives of those living with cystic fibrosis by registering to run or making a donation to one of our dedicated team members!
We've made incredible progress in the fight against cystic fibrosis, but we still need to strive to cross that finish line and find a cure!
What Is Cystic Fibrosis?
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, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is in the late 30s.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
Learn more about Cystic Fibrosis and our chapter: http://wpa.cff.org
Learn more about our Run to Cure CF Program at: http://wpa.cff.org/runtocureCF
$100 - Kid's Marathon
$200 - 5K
$1,500 - Relay Team
$400 - Half Marathon
$500 - Full Marathon
Fundraising minimums must be met by April 29, 2015. Once you register through Team CF on Crowdrise, within one week you will receive a confirmation e-mail from the Pittsburgh Marathon verifying your registration.
Don't think you can meet your fundraising minimum? Contact Lauren DiMaria at firstname.lastname@example.org or 412-321-4422 to set up your fundraising plan and guarantee your race spot today!
All Run to Cure CF team members will receive*
Run to Cure CF Gender Specific Performance Tee
Volunteer Led Group Training Runs
Coach provided Training Plans and Tips