This is Alexandra’s Assembly’s 17th year participating in the Great Strides walk for Cystic Fibrosis, and our 10th year as a National Team with teams walking in New Mexico and Connecticut, on behalf 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. Since all in-person Great Stride walks were cancelled through late June, we would still like to encourage you to support the Cystic Fibrosis Foundation and the great research they support by participating in the national virtual walk on 6/5. This is a national fundraising effort to raise awareness and money for research to find a cure for Cystic Fibrosis.
Thanks in part to the funds we have raised with your help, new treatments continue to be available to CF patients like Alexandra, with over 50 medications in the development cycle (or as the CF Foundation likes to refer to them “in the pipeline”) This “pipeline” of drugs is only available due to the money raised each and every year, thanks to your donations. With approximately only 30,000 CF patients in the US, the Pharmaceutical companies most likely would not be developing these drugs without the venture philanthropy by the CF Foundation. The CF Foundation has invested millions of dollars in research programs with leading biopharmaceutical companies worldwide. Earning royalties on drugs they invested in, that is 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 will be the nearest, and her go-to CF clinic, if she needs immediate specialized care while at college. The CF Foundation has also invested millions in Gene Therapy Research, which could help more than just the CF community.
An update from Alexandra: I just finsihed my senior year of high school and will be attending Ithaca College in the fall and playing on their field hockey team. I continue to go to the John Hopkins CF clinic quarterly. At the beginning of May, I had my first video checkup with my care team at Hopkins. My lung function test in February was up just slightly from November. We hoped for a little more, but since I had also had the flu a few weeks before, it wasn’t too surprising. I am excited to see on my next in-person visit what my numbers are. My medications consist of about 30 pills each day and a once a day inhaled medication specific for CF. In the last couple of months I noticed my blood sugar was a bit off. After adjusting insulin and monitoring for a while, and consulting with my CF doctors, it was decided for now that I can discontinue my insulin injections! My numbers will still be closely monitored, but this is possibly a result of the Trikafta (a medication for CF that was new in December). 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. I have a great team of doctors between my pediatrician and my Hopkins doctors and continue to receive great care. I have my quarterly visits planned out for when I am home from college so that I can still make it to all of my appointments. Thank you for being a part of Alexandra's Assembly. I am sad I won’t get to see you at the walk this year – it is my favorite day of the year – but hopefully next year!
As Alexandra mentioned Trikafta; this is the newest therapy for correcting cell function in 90% of patients with CF. There are more than 1700 mutations that are classified as CF, this drug only helps patients with the F508del mutation like Alexandra. This new "triple combination" drug replaced the Orkambi that Alexandra started four years ago. This "triple combination" is another example of a therapy that 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.
This year’s walk will be a virtual walk, with a national virtual event on 6/5. If you are interested in joining us virtually this year, or start your own local Alexandra’s Assembly team, 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, which you can mail to us at 1200 Cecilia Court, Annapolis, MD 21409.
Thank you for helping us in our hopes for a cure.
Scott and Wendi Clough