Normally this is where we would give you the when and the where about our walk, but this is not a normal year. We will not be walking as a team at the stadium this year but would like to still encourage you to support the Cystic Fibrosis Foundation and the great research they support.
This would have been Alexandra’s Assembly’s 17th year walking at the Great Strides walk for Cystic Fibrosis in Annapolis, on behalf of our daughter, Alexandra, who was diagnosed at birth in 2002. This also would have been our 10th year as a National Team, with teams walking in New Mexico and Connecticut. CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. This is a national fundraising effort to raise awareness and money for research to find a cure for Cystic Fibrosis - but we would love to expand our team and could use some more walkers. Would you consider walking with us, starting your own local Alexandra’s Assembly Team and/or donating to our cause?
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 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 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 goes, and University of Rochester Medical Center which will be around the “corner” if she needs immediate specialized care while at college next year. The CF Foundation has also invested millions in Gene Therapy Research, which could help more than just the CF community.
Your donations are directly responsible for the new problem the CF community is facing, how to care for the increasing numbers in the adult CF population! When Alexandra was born the median age was 33, this year it is over 44 years of age. Thank you so much for being a part of causing this problem!
An update from Alexandra: I just completed 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 tests are still at my baseline. My medications have mostly stayed the same this past year. This consists of about 30 pills each day, my once a day insulin injection, and an inhaled medication specific for CF. I was just told that I don’t have to take insulin anymore, we think the new Trikafta medicine is working! I also do chest PT twice a day with my vibrating vest - this is to help loosen up and 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. Thank you for being a part of Alexandra's Assembly. I am sad we won’t get to see you at the walk this year, but maybe next year.
As Alexandra mentioned Trikafta, which is 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 new "triple combination" drug replaced the Orkambi that Alexandra started four years ago. While we have yet to see the lung function increase, we are excited that Alexandra does not have to take daily insulin anymore, which could be attributed to Trikafta. 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.
Due to COVID, this year’s walk will be a virtual walk, with a national, virtual event on 6/5. If you are interested in this event let us know and we can help get you the information.
If you would like to make a donation to help us 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.
Please let us know if you have any questions. Thank you for helping us in our hopes for a cure.
Scott and Wendi Clough