Most of you know me as Anne, Mrs. Governor, Alexa and Hannah’s Mom or even the police officers wife, all titles I am honored and blessed to have.
What some of you may not know is I also have another title: 'Cystic Fibrosis Patient'.
I am one of more than 70,000 people word wide fighting a daily battle against the life shortening, genetic disorder Cystic Fibrosis. Cystic Fibrosis or CF as it is often called is a chronic condition which affects my respiratory and digestive systems. Cystic Fibrosis causes my body to produce unusually thick, sticky mucus that clogs my lungs, causing chronic cough, breathing difficulties and life-threatening lung infections. The abnormal mucus also obstructs my pancreas, stopping enzymes from properly digesting food for my body to absorb. CF often brings secondary issues such as diabetes, sinusitis and arthritis. Cystic Fibrosis affects every part of my body.
I spend between 2 to 5 hours out of each day breathing in medication to help clear my lungs. While I do these breathing treatments, I wear a vest that literally shakes my body and lungs to help move the mucus. I also take about 30 pills a day to help digest the food I eat. I take numerous vitamins and supplements to replace the nutrients my body cannot absorb.
Despite my best efforts to stay healthy my body becomes worn down trying to fight the ever present infection in my lungs. When this happens, about every 3-6 months, I require IV antibiotics for 2 to 3 weeks at a time. I do the majority of my IV treatments at home but from time to time I require hospital care.
When I was born in 1980 my parents were told they would be lucky to see me reach my teenage years. As I grew so did the median age of survival for all with CF. Today, roughly 40% of all people with CF are adults with CF. The median age of survival is now 37 years old. Great Strides have been made in the treatment for those of us with CF but it is still not enough. Every day, lives are lost to Cystic Fibrosis.
2012 marks the year the first drug, Kalydeco, was approved to treat the underlaying cause of Cystic Fibrosis in a small percentage of the CF population. On going studies which I am a proud participant in are now underway to find drugs which will treat the underlaying cause of CF in patients with the most common forms of Cystic Fibrosis. These groundbreaking treatments would not be possible without our continued support of the Cystic Fibrosis Foundation. These treatments are the key to not only curing Cystic Fibrosis but possibly hundreds of other diseases!
For the third year in a row, Team Governor will be taking to Genesee Valley Park to walk in the Great Strides Fundraiser. With your help, last year Team Governor raised over $4,000. You should be proud to know that .90 cents out of every dollar donated has gone directly to research and new treatments.
I know that together, along with many other people walking across the United States, a cure will be found. Fundraising=Research. Research=Life. All of you have given me the promise of "life" by your generosity and open hearts.
On behalf of Team Governor I invite you to walk with us, raise donations, give a gift by donating to The Cystic Fibrosis Foundation and Team Governor or simply keeping our team and all affected by Cystic Fibrosis in your prayers.
I can speak for all 30,000 people in the US and our 60,000 lungs when I say: Thank You for doing all you can to help make CF stand for Cure Found!