EVENT DATE: May 03, 2015
In my fundraising letter last year, I referenced a chart (2 pictures after the video) that I would like to update you on. The FDA has set a target review date of July 5, 2015 that would allow a combination therapy drug (dark blue) to help treat 50% - or 8,500 people of the CF population in the U.S. aged 12 or older. A drug company is already initiating a study for this same combination drug to treat CF children ages 6-11. These drug breakthroughs are also being studied with other combination drugs to help treat other CF mutations. The CF Foundation has come a long way since January 2012 when Kalydeco, the first drug to treat the underlying cause of cystic fibrosis, was released. I couldn’t be more happier working for a Foundation with such great updates every year…..or even every few months.
My goal was to run my first half marathon this year, but I ended up having some medical setbacks. In November of last year, I found out I have a herniated disc between c5 and c6 of my neck. I have been trying to get treatment for relief since April of last year. Since I found out my diagnosis, I have been trying to avoid neck surgery with other forms of treatment. I was unable to keep up with my training and I have decided to back out of the half this year and run two legs of the relay. Instead of running 13.1 miles, I will be running between 8-10 miles. I am hoping to have this resolved before I run my first half next year because I really want my training to be a memorable one.
On the flip side, this diagnosis for me is nothing compared to what CF patients go through. We have several CF patients running with Team CF this year and some of them struggle with their health to even keep up with their training. They battle this disease every day and currently this is no cure. For me, I am able to hopefully find a solution so I am no longer in pain. We had one CF patient end up in the hospital the day before her half marathon race. Since then, she has ran several half marathons and is training to do the full marathon. Another CF patient has ran the half marathon the last couple years and may be dropping down to the 5K because of his lung function. This just shows you how stronger CF patients are and the challenges they go through EVERY DAY! Please help us in our search for a cure to one day make CF stand for Cure Found!
CF Facts from the 2013 Patient Registry:
- More than 28,000 people with CF were seen at a CF Foundation accredited care center
- 2,697 people with CF were 40 years or older
- 66% of new CF diagnosis were made in the first year of life
- The median predicted age of survival has increased from 33.4 years in 2003 to 40.7 years in 2013
- 97% of people with CF have had their mutations identified through genetic testing
- In 1986, 29.2% of patients were 18 years or older; in 2013, 49.7% of patients were 18 years or older
- In 2013, 245 people with CF received a lung transplant; the median age of recipients was 31 years
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