WE WILL BE WALKING IN PERSON THIS YEAR!
This is Alexandra’s Assembly’s 19th year 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. 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 4th. We are back at the Naval Academy Stadium with registration beginning at 10 am. This is a national fundraising effort to raise awareness and money for research to find a cure for Cystic Fibrosis. We continue to be a National Family Team with teams walking in multiple locations across the country, most recently in Ithaca NY with her field hockey team.
An update from Alexandra: I just finished my Sophomore year of college. Managing CF in college on one hand was a big adjustment, and on the other was the same as it has always been. When I came to college I had to get used to doing therapies with my new schedule, packing pills for class that I used to take before school, and making sure I always had a supply of any medications I could need…just in case. However, even though these adjustments had to be made for school, my years of managing my medicines and therapies prepared me in the best possible way for this transition.
Another thing that greatly helped the transition was my team and coaches here at school. Everyone was very supportive in making sure that I didn’t get sick, and making sure if I needed anything I had support. Also, we completed runs five times a week, which helped me break up and expel the mucus in my lungs. Last October, the team surprised me with dedicating a game to me and all those with Cystic Fibrosis, wearing Alexandra’s Assembly team shirts during warm ups and each player wearing my number on their wrist. We also all walked in the Ithaca Great Strides walk on May 5th.
I continue to go to the John Hopkins CF clinic quarterly. I have my appointments planned out for when I am home from college so that I can still be seen quarterly. My medications still consist of about 30 pills each day and a once a day inhaled medication specific for CF. I also do chest PT twice a day with my vibrating vest – this is to help loosen up any mucus that might be in my lungs. At the end of March, I had my latest checkup with my care team at Hopkins. My lung function was improved from my last appointment (I think in large part from all the conditioning I do with file hockey).
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. With approximately 30,000 CF patients in the US, pharmaceutical companies most likely would not be developing these drugs without the venture philanthropy of the CF Foundation. Your donations make this possible. The CF Foundation has invested millions of dollars in research programs with leading biopharmaceutical companies worldwide. Earning royalties on drugs they invested in, that are then reinvested in the next round of research. The CF Foundation also invests millions in the care centers, like the one at Johns Hopkins University Medical Center where Alexandra is treated, and University of Rochester Medical Center which is the nearest, and her go-to CF clinic, if she needs immediate specialized care while at college. Alexandra takes many medicines in a day, one is Trikafta the newest therapy for correcting cell function in 90% of patients with CF. There are more than 1,700 mutations that are classified as CF, this drug only helps patients with the F508del mutation like Alexandra. This drug is only available because of the money we raise for the CF Foundation, that they then invest in development of new treatments for all CF mutations.
If you are interested in joining our walk on June 4th, 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
Thank you for helping us in our hopes for a cure.
Scott and Wendi Clough