BENEFITING: CYSTIC FIBROSIS FOUNDATION (inactive)
ORGANIZER: CYSTIC FIBROSIS FOUNDATION (inactive)
EVENT DATE: May 04, 2014
Can you see a difference between the first two pictures of these beautfiul babies? (click "See More" to read my story!)
Last year, I became a proud Aunt and Godmother to my niece, Layla (First Picture) that was born on July 25th. During my sister’s pregnancy she was tested for the cystic fibrosis gene, which she was fortunate to find out that she did not carry the gene. Unfortunately, ten million — or about one in every 31 Americans — are carriers of the defective CF gene, but do not have the disease. Not all children can be as healthy as Layla when they are born.
Meet Natalie (Second Picture). She is a beautiful 1 year old girl that was born January 2013. She was diagnosed with cystic fibrosis when she was still in her mother’s stomach. She is currently doing very well and enjoys the outdoors with her family! From the outside, CF patients look just like everyone else, but on the inside their lungs have thick mucus that makes it hard to breath.
I am setting another challenge for myself this year. Instead of running a 5K again, I will be taking on the challenge of running in the Pittsburgh Marathon Relay along with 3 of my co-workers. My goal is to beat my challenge and cross the finish line, but to also give hope to CF patients that fight challenges every day!
What is cystic fibrosis:
- Genetic lung disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide)
- Clogs the lungs and leads to life-threatening lung infections
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food
- Many people with the disease can now expect to live into their 30s, 40s and beyond
The life of an average cystic fibrosis patient:
- 40+ pills per day
- 2-3 breathing treatments a day
- 2 “Shakey vest” treatments a day for at least 30 minutes each
- Some patients even have feeding tubes and have to do feedings while sleeping at night
- Many hospital visits because of ongoing lung infections
Why you should donate TODAY!
In February 2012, the FDA approved Kalydeco for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF, but it only treats 4% of our CF population.
On February 21, 2014, the FDA approved Kalydeco™ to treat people ages 6 and older who have one of eight additional cystic fibrosis mutations (G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P and G1349D). In the United States, approximately 150 people have one of these additional eight mutations. Not many organizations can share great progress for such a rare disease.
We wouldn’t be here today without the support of people like you! Help us get to 95% of our patients by 2017! We will not stop until we have a “cure” for all people with cystic fibrosis.
Our family is fortunate to not be in Natalie and her family’s position. With more than 1,000 different mutations of the CF gene and approximately 30 potential CF therapies in the CF Foundation's drug development pipeline, we need to continue to advance these therapies so we can help more than just the patients with those nine mutations. Help us make CF stand for Cure Found.
Thank you for your support,
The video after the pictures has been played at several of our events! Or click HERE to check it out!