It is that time of year again, where Bob’s Buddies is preparing for its 16th Great Strides Walk in support of the Cystic Fibrosis Foundation. We are excited to be returning to an in-person walk after a 2-year hiatus because of Covid.
Bob’s Buddies has raised over $155,0000 to support Cystic Fibrosis Research thanks to your generous support.
Bob was able to return to school for his sophomore year of high school, now that he is vaccinated. Thank goodness, because another year fully remote would have been difficult on all of us. Although Bob continues to be extremely cautious because of Covid, it is nice to have some normalcy again.
Since starting Trifakta, Bob has stayed out of the hospital and has only required an occasional course of antibiotics. He no longer requires daily chest PT and nebulizer treatments. He now only needs those treatments when he gets sick. That is 2 hours of quality time he has gained back in his life each day.
Bob continues to take Trikafta, but has actually been reduced to taking it every other day, because of its side effects. He was experiencing elevated liver enzymes and significant weight gain. His doctor hopes the adjusted dosing will continue to be therapeutic but reduce the side effects.
We continue to support the Cystic Fibrosis Foundation to fund research to find the next generation of treatments, that will hopefully have less significant side effects.
To make a tax deductible donation to Bob’s Buddies, please visit http://fightcf.cff.org/goto/bob.
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.