This is Alexandra’s Assembly’s 18th 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. Since all in-person Great Stride walks were cancelled again this year, we would like to encourage you to support the Cystic Fibrosis Foundation and the great research they support by participating in our virtual walk on June 5th. 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 the 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”). This “pipeline” of drugs is only available due to the donations made each and every year by people like you. The CF Foundation has also invested millions in Gene editing research, including mRNA therapies which two of the three Covid Vaccines utilize. With approximately 30,000 CF patients in US, the 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 1700 mutations that are classified as CF, this drug only helps patients with the F508del mutation like Alexandra. This 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.
An update from Alexandra:
I just finished my freshman year at Ithaca College! This year was a little crazy. My first field hockey season, and my first academic semester were completed virtually, but this spring I was able to get on campus, get my vaccination, and play with my team!
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. At the end of March, I had my latest checkup with my care team at Hopkins. My lung function test was improved from the last time I was in (I think in large part from all the conditioning I do with field hockey). I am excited to see how my numbers progress on my next visit as I continue to do my treatments, and get in shape for my next season.
My medications 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.
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 we can all walk together again.
If you are interested in doing a virtual walk on June 5th, or starting 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.
If you do walk this year, please send us a picture of you and your family and friends walking in your Alexandra’s Assembly shirts. If you don’t have shirts to wear, just let us know and we will send them to you.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.