This June marks 20 years for us participating in the Great Strides walk for Cystic Fibrosis, in honor of our daughter, Alexandra, who was diagnosed at birth in 2002. CF is a progressive, genetic disease that primarily affects the lungs and digestive system. When Alexandra was born in 2002 the median life expectancy was about 30 years of age. Over the years this number has continued to climb and current the median life expectancy is 56! We hope this number can continue to rise. We would like to encourage you to support the Cystic Fibrosis Foundation and the great research they support by joining or supporting us in the Annapolis Great Strides walk on June 3rd at the Naval Academy. This is a national fundraising effort to raise awareness and money for research to find a cure for Cystic Fibrosis.
An update from Alexandra: I will finish my junior year of college in May. This past year had some health challenges. The biggest was that in January I was diagnosed with CFRD (CF Related Diabetes), which shares traits of both type 1 and type 2 diabetes. I was immediately started on two types of insulin, and after a couple weeks of adjusting to the idea, I decided to utilize a glucose monitor (placed on back of upper arm for a 10-day period then swapped out with a replacement) to monitor my blood sugar. The monitor can give me a reading of my levels every 5 minutes as well as alarms my phone if I get too high or low. I give myself insulin injections vs using a pump, but will keep that option open in the future. I have made adjustments to my diet and have gotten pretty good control of my numbers, though somedays are harder than others. In addition to insulin, I continue to take about 30 pills a day, as well as an inhaled medication each day, and chest pt (done with a vibrating vest) twice a day for 15 minutes each time. I am able to continue doing what I love in playing field hockey and have found the right placement of my glucose monitor so that my goalie gear doesn't get in the way of it. I am surrounded by a great support system, both at school and back home. I continue to go to the John Hopkins CF clinic quarterly, and the newly added endocrinologist at Hopkins who manages my CFRD.
Thanks in part to the funds that we have raised with your help, new treatments continue to be available to CF patients like Alexandra, with close to 40 medications in the development cycle (or as the CF Foundation likes to refer to them “in the pipeline”). More drugs are also starting to be available to other CF patients, who do not have a common mutation, getting us one step closer to a Cure Found for all. This “pipeline” of drugs is only available due to the donations made each and every year by people like you.
If you are interested in joining our walk on June 3rd, or starting your own local Alexandra’s Assembly team, please let us know and we can get you the information. If you would like to make a donation to help reach our goal, you can make a secure online donation by clicking "donate to me" at the top of this page. If you prefer, you may also donate by check, made out to the Cystic Fibrosis Foundation, and mail it to Scott Clough, 1200 Cecilia Ct, Annapolis Md 21409
http://fightcf.cff.org/goto/Alexandras_Assembly
Thank you for helping us in our hopes for a cure.
Scott and Wendi Clough
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.