When: Saturday, June 1, 2019, Registration opens 10am, Walk starts 11am
Where: US Navy Stadium, Annapolis, MD
It is hard to believe this will be our 16th year we will be walking at the Great Strides walk for Cystic Fibrosis, on behalf of our daughter, Alexandra, who was diagnosed at birth in 2002. CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. This is a 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 and/or donating to our cause?
An update from Alexandra: I am almost done my junior year of high school and am looking at colleges. I still play field hockey year round and am hoping to play in college. I go to the John Hopkins CF clinic quarterly, and also see a doctor there who specializes in CF-related diabetes. At my September and December visits my lung function tests had dropped below my norm. Not sure why, but at my March visit they came back up to my baseline! Hopefully they will be the same or higher at my next visit in June. My medications have 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 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 got a new (additional) vest this year. It is fairly new to market, and is cordless and more compact. This makes it eaiser for me to travel, go to camps, and when I am on the go, etc. 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 looking forward to the walk again this year.
We are eagerly awaiting the newest therapy for correcting cell function in patients with CF. This new "triple combination" drug will replace the Orkambi that Alexandra started three years ago. The "triple combination" has shown an increase of over ten percentage points in just four weeks with respect to the expected lung function in patients. 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. The CF Foundation is also showing great progress with gene editing, having success in the laboratories with both RNA and DNA editing and correction. It is still very early for this potential therapy, but with your support we will continue to have success in developing new treatments for CF.
Great Strides is a fun, family-friendly event. Registration is from 10 to 10:45 and the walk starts at 11am and is wrapped up by 12:45 pm. There are vendors with free giveaways, free food, live music, and more. The walk is around the perimeter of the Naval Academy Stadium Grounds, 1.2 miles. We can't express enough what this walk means to her. This walk, that short afternoon, is by far her favorite day of the year. She so looks forward to it each year and seeing all of her team in our Alexandra's Assembly shirts out there supporting her. Please consider joining our team by clicking the "join my team" button to the right. Or just show up! We provide team t-shirts to all of our walkers, handed out at registration. If you are joining us access to the stadium is via Gate 6 off of Taylor Ave. Parking is free, paid for by a corporate sponsor. We are on the South East side of the Stadium, straight ahead of you as you pull through Gate 6.
If you are unable to join us at the walk but 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