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CF Walk Letter 2018

Dear friends and family,

I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures. 

My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs within the next month for my next round of antibiotics. I started going to pulmonary rehabilitation to try to help stabilize my lung function, and that has helped condition me a little bit. I continue to do 3 breathing treatments a day and take over 30 pills a day. 

However, there is exciting news. I am most likely going to be in a study starting at the beginning of the summer sponsored by Vertex for the triple combination drugs. These drugs have the potential to address the underlying cause of CF and could help my lung function increase pretty dramatically. We have a lot of hope that this study could be transformative for my health. We are (not so) patiently waiting for the study to begin. 

These new drugs are all thanks to YOU. The Cystic Fibrosis Foundation funds CF research, like Vertex’s drug developments,  from the donations they receive throughout the year. In the 1950s, many people born with CF didn’t live through elementary school. Now, many people with CF are living into their 30s, 40s, 50s, and beyond, all thanks to the never-tiring efforts of the Cystic Fibrosis Foundation. 

My family and I will be walking at the Great Strides CF Walk on May 20th in Fort Worth, and we would be so honored to have you walk with us. Great Strides is an amazing event, and it really is special to be part of. We also would appreciate any donations to the CF Foundation. Every penny helps us get closer to our goal of finding a cure for Cystic Fibrosis. Click on the link below to sign up to walk with us and/or to donate to our team!

Thank you for your continued love, support, and prayers.

With love,

Emily

Comments

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