Team Hall’n for CF did their own “walk” this year. J The risk of cross-infection kept us away from the CFF sponsored Great Strides walk, but we are still supporters of the Cystic Fibrosis Foundation and we believe in their dedication to finding a cure for cystic fibrosis. So this year, the Hall’s headed over to Lake Flanagan on a beautiful May day to enjoy some family time in honor and support of the CFF’s fundraising efforts.
As most of you know, our daughter Alexa was diagnosed with cystic fibrosis right after starting kindergarten at age 6. Three short months later, our newborn daughter Presley was born with this life-threatening, genetic disease as well, and spent seven weeks in the NICU before being released home. It was hands-down our most difficult year thus far, as we learned about the disease, worried about their futures and made plans on how to keep them healthy until a cure is found.
That was nearly eight years ago. We are still learning about the disease and how it manifests in the girls in different ways. Alexa’s pulmonary function remains strong, however, we are watchful of the impact CF is having on her liver. Presley’s pulmonary function is good as well, but we must always keep a watchful eye on the impact CF has on her GI tract. Although the worry never completely goes away, our family has learned to focus on today – not on CF – because even though their days are filled with CF, they are so much more than CF.
Alexa will be 14 in a few weeks and will start 8th grade in the fall. She competes in basketball and swim team, works hard at school and gets wonderful grades, enjoys cooking club and band and is volunteering at a summer camp and a local library. CF is just her mandatory side-gig.
Presley is seven years old and going into 2nd grade. Thankfully, she loves to be active and enjoys basketball, volleyball and swim team. She loves school, art, reading and playing with friends. CF does not consume her days, but it’s just not something she can ever ignore or leave behind. It is her pesky side-kick.
Both girls are still taking Orkambi, a drug developed through funding from the CFF, which helps their bodies at the cellular level to do what they are supposed to be doing. However, Orkambi does not provide the benefits that the next generation drugs are showing in clinical trials. If all goes well, the next exciting CF drug may come to market by early 2020. In clinical trials, it is showing lung function improvement in the double digits and decreasing sweat chloride levels to near normal. (Elevated sweat chloride is the diagnostic test for CF). We believe this could be a game changer for them.
So while we weren’t at Great Strides, we continue to believe that the Cystic Fibrosis Foundation is the key to curing CF. We will still donate to the CFF to support continued research and we are still asking you to consider donating so that hopefully, one day, Alexa can quit her side-gig and Presley can ditch her pesky side-kick.
Please consider donating by clicking on the "Donate to Me" button above or you may mail a check made payable to the Cystic Fibrosis Foundation to Steve & Wendy Hall at 16511 Bauman Circle, Omaha, NE 68116.
Many thanks for your consideration and concern for our girls,
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.