May is Cystic Fibrosis Awareness Month. We're focusing on raising funds to us get one step closer to a cure for cystic fibrosis as well as to raise awareness of what CF is and how people and families are impacted by a CF diagnosis.
The CF Foundation leads the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled since 1988 due to scientific advances. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or their genetic mutations dont' respond well
We are standing on the shoulders of so many other families who have fought tireleslly to find answers to their children's poor health, which lead to the discovery of CF and then went on to fight to raise money to find a cure. These parents and children have had to ensure so much during this fight and we are so grateful for their endless efforts to create medicines and treatments that will and are helping to make CF a liveable disease, one which will be cured in Naomi's lifetime.
It's important to our family that CF'rs feel supported in their journey and know that they don't have to face anything alone. What is Cystic Fibrosis? Cystic fibrosis is a rare, progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
It's a "salty" disease! It is caused by a defective gene that doesn't balance salt and water properly in the body. This leads to a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus (kind of like sticky gum) clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure.
In the 1950s, few children with CF lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s, and beyond.
Things to know about CF: - When healthy, people with CF spend 1-2 hours a day doing breathing treatments and wearing a "shaky" vest to help loosen mucus. That’s 1 month a year. This can increase to 4 hours a day when they have a cold.
- It can be a lonely journey. People with CF can never get in close proximity to another person with CF. They carry bacteria in their lungs (even when healthy) that can get in the lungs of other people with CF through coughing, breathing or sneezing. This community tries to keep each CF person's bacteria to themselves so that they don't create "superbugs" by sharing the bacteria back and forth between CF'rs creating stronger and more dangerous bacteria that primarily only harms people with CF
- CF is sometimes referred to as 65 Roses because it sounds like "cystic fibrosis" and is easier for kids to say
- Naomi was diagnosed at 3.5 weeks old
- 30,000 Americans have CF. 70,000 worldwide
- The predicted median age of survival for a person with CF is in the early 40s.
- 1 in 31 Americans are symptomless carriers of the defective CF gene and there is often no family history of the disease
- More than 25 promising lifesaving mediciines are currently in development
- people with CF get extremely pruney hands when they get wet, even for a few minutes! This is caused by the salt and water not properly flowing in and out of their cells -- this happens to some people who carry the defective CF gene as well!
- avoiding soil, bath toys, water toys, gardening
- Nearly $3B was spent by the CF Foundation on its mission and advancing new therapies over the past 25 years.
- We need approximately $9B to cross the finish line and find a cure
Ways to learn more:
- Breathe from Salt: This inspiring book is the discovery of CF, the fight to find a cure, the science behind the disease and path to a cure.
- The movie Salt in My Soul - just released in 2022 a story of a young woman with CF who documented her life for her parents to turn into a film after she passed
- The move Five Feet Apart on Netflix https://www.imdb.com/title/tt6472976/
- On social media, great instagrams to follow include:
- Stories of kids with CF: @cystic_fibrosis_warriors_
- Foundations: @cf_foundation , @cfri.cure.cf
- Families/people with CF: @lovetobreathe , @thecandcdiaries , @shermanmandie
Living with CF: Living with CF means incorporating various treatments and precautions into everyday life to stay healthy. This includes doing inhaled breathing treatments as well as vest therapy to break up sticky mucus that can get stuck in the lungs. It means avoiding/social distancing from anyone who has any symptoms of a respitory illness such as a cold or flu, no matter how mild the symptoms may be. It also means keeping the environment free from germs and bacteria. Not only do people with CF have to take precautions to avoid typical germs we may be all aware of, Cf'rs also have to avoid germs that do not typically cause any symptoms in people without CF. This includes a variety of bacteria that exist in our environment, water sources and soil that can be difficult to get rid of once inside someone with CF.
Will you join us?
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.