Scott Clough

We will walk on June 1st in our 21st year of the Great Strides walk for Cystic Fibrosis, in honor of our daughter, Alexandra, who was diagnosed at birth in 2002.  Would you consider donating to the CF Foundation and/or joining us at the walk?  We remember vividly the day we got the call when Alexandra was two weeks old that “her genetic testing is back, and it isn’t good.  She has cystic fibrosis.”  Neither of us knowing what CF was, we began our journey as parents of a tiny newborn, who we were told had a life-shortening genetic disease, for which there was no cure.  Not easy news to digest.  But we did, and from there we have not looked back and only towards what we as parents could do to ensure she stayed as healthy as possible growing up, thus giving her the best chance at a long, healthy life WHEN a cure is found.  We quickly educated ourselves with the help of her CF Clinicians at Johns Hopkins and gave Alexandra what we deemed age-appropriate information about CF along the way.  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 currently median life expectancy is 56!  

An update from Alexandra: I just graduated from Ithaca College in May 2024 and have decided to go to grad school in September.  I continue with my journey of having CFRD (CF Related Diabetes), which I was diagnosed with in February 2023.  I take two types of insulin and use a continuous glucose monitor to monitor my blood sugar.  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. Moving to a warmer climate in September will be an adjustment (I definetly felt I could breath better in the cooler air of upstate New York than in Maryland), but as I have always done, I will listen to my body and adjust as needed and as best I can to ensure my lungs stay as healthy as possible.  I continue to be treated at Johns Hopkins CF Clinic in Baltimore, but have recently transitioned to the adult clinic.

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 1st, 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