Skip to main content

CF letter 2013

Below is a copy of my 2013 CF letter update. Annually, my family raises money for the Cystic Fibrosis Foundation to financially support the great work being done on behalf of CF patients like me. I would be so grateful if you would read the letter, donate money to my team, join us for the Great Strides Walk on May 18th, and/or share my letter with a few of your friends and relatives. Thank you so much!!


Dear friends and family,
                I hope you all have had a very blessed 2012-2013 year. This year has been a whirlwind for me! In May, I completed my freshman year at Baylor University with a 4.0 GPA. True to my normal fashion, my summer was full of many activities. I volunteered at a speech pathology clinic and fell more in love with my future profession. My family went on an Alaskan cruise, where we zip lined through the dense forests, saw amazing wildlife, and even took a floatplane over the Misty Fjords. I also took a summer school class required for my degree program. When I began my sophomore year in August of 2012, I was refreshed and ready for another awesome year at Baylor. My sophomore year has been so much greater than I could have even imagined. I’ve supported my Bears at sporting events, grown more mature in my relationship with God, made incredible, life-long friendships, continued to be plugged in at Highland Baptist Church and am leading a Community Group, rushed Sigma Phi Lambda, maintained my 4.0 GPA, and gotten a job as a reading specialist in Baylor’s Language and Literacy Clinic. Reflecting over the past year, I am blown away by God’s goodness and favor in my life.
                No matter the circumstances of my year, I strive to always be joyful and content because my God is Sovereign and completely trustworthy. That being said, this year has had its challenges. Over the summer, I was scheduled for a last-minute sinus surgery that was completely unexpected. I don’t know if I’ve ever been as miserable as I was for the first week after the surgery. I couldn’t breathe, especially at night, which means I didn’t sleep at all. I've received IV antibiotics twice, including a week while I was at school in January. I've been diagnosed with anemia and have added iron supplements to my daily pill count. And I continue to do all I can to remain healthy, doing breathing treatments, popping 35 pills a day, exercising regularly, going to the doctor, and carefully following research developments, all while balancing my social, academic, and spiritual life. Let me tell you, living with CF can be exhausting!! However, through the good times and the bad, I can't help but proclaim Psalm 105:4--"Seek the Lord and his strength; seek his presence continually!"
            There is great hope in the CF community. Scientists are working diligently to find a cure as well as improve CF patients' quality of life while dealing with the symptoms of CF. Vertex Pharmacy released a new drug called Kalydeco, which treats the cause of CF in people with a specific type of mutation. Now, there are 2 more drugs being studied with Kalydeco in people with the most common mutation. Every day, we're getting closer to finding a cure for CF! There are four ways you can help people like me in my fight against Cystic Fibrosis. First, you can donate money to the Cystic Fibrosis Foundation. The CF Foundation raises the majority of money given to research facilities around the country. Your monetary gifts provide the funds needed to continue discovery and drug development. Second, you can come out to the Great Strides Walk at Concordia University on May 18th to support those with CF. My family and I will be there and would love to have your support! You can follow the link below to donate money online and/or sign up for the walk. You can also send money to my home address listed below (make checks payable to the Cystic Fibrosis Foundation), and my family will turn it in on the day of the walk. Third, please send this letter to one or two friends and ask them to consider donating money or joining you the day of the walk to raise awareness about Cystic Fibrosis. Lastly, you can remain my awesome support system. I need people like you to encourage me, pray for me, and hold me accountable. I appreciate you all more than you know. Thank you for standing beside me for yet another year, fighting to cure CF!

Love always,
Emily


Comments

Popular posts from this blog

CF Letter 2020

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr

CF Letter 2019

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb

The spirit of giving

It’s the end of 2017. That means it’s time to send in those end of year donations. Want to give to some amazing charities actually doing good in the world? I’ve compiled a list for you!  The Cystic Fibrosis Foundation- Obviously, I’m biased toward CFF. They fund amazing research that is saving people’s lives! Don’t you want to be part of that? Not only that, but 90 cents of every dollar goes directly to advocacy and CF research. If you donate to the Cystic Fibrosis Foundation, you know your money is going to be spent wisely and is going to make a difference. Since cystic fibrosis is an orphan disease (that means it’s really, really rare), people with CF rely on your donations to fund research. As well, Congress just cut the orphan drug tax credit, meaning companies are not going to get as much incentive for studying orphan diseases and creating drugs to treat them. The CF Foundation needs people like you to donate to CF research so we can find a cure for CF SOON. —www.cff.org