In 2015, Henry was prenatally diagnosed with cystic fibrosis- a potentially life-threatening genetic disease affecting mainly the lungs and pancreas. It threw us into a whirlwind of unknowns and scary google searches, which we will never forget. But, on May 30, 2016, Henry was born and we met the most perfect baby boy. Although he has had a fairly healthy 5 years of life, there have been challenging days because of CF.
Every day, to stay as healthy as possible, Henry does 2 thirty-minute vest and nebulizer treatments and takes a variety of vitamins- all to keep his lungs clear and his body growing and thriving. In December 2017 he began taking Kalydeco, a miracle drug which has already made a huge impact on his life. Henry, like many others with CF, was born pancreatic insufficient- meaning his body did not properly digest food. However, after taking Kalydeco for 2.5 years, he's pancreas regained function. He no longer takes 20+ pills a day with meals. We have big hopes that eventually, Henry can regain 1+ hours a day by substituting treatments with a healthy diet and exercise. One day, we hope that his life expectancy is the same as any other child his age.
These advances in treatment and medicine would not be possible if it weren’t for those of you that have helped to support the CF Foundation- through your donations and by spreading awareness. Research has made such an impact on his life, our lives, and we must continue to push forward!
Henry is one of the strongest, sweetest, and funniest little boys we know (biased, but still). We continue to raise awareness and funds for the CF Foundation so that one day our little boy will have no restrictions in life. We also wish to support a community which has given us more love than we could ever give back. We need a cure for CF which has already taken the lives of way too many.
Please consider walking, donating, or simply sharing our cause with the world! Henry’s Herd has raised over $40,000 since 2016- all for research for a cure. We are grateful beyond words for your support; we cannot stop until a cure is found!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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.