Nolan Patrol is on a Roll

Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal! 

Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this  team" button. From there, you can donate and start fundraising.  

As a member of our Nolan Patrol, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found!

First and foremost, please join us on Sat May 18 for the Walk! We had an awesome turnout last two years, and we’d love to repeat it. When Nolan looks back at pictures of his early years, he will see in those pictures the love and support he has had from Day 1. Second, feel free to donate to our team or create your own fundraising goal on our team Nolan Patrol is on a Roll and, in turn, the Cystic Fibrosis Foundation (see below on all that they have done and are doing). Any amount, as every little bit counts.

Nolan’s first year was a challenge we were not necessarily ready for (or that he was ready for), but he is the strongest little guy we know. He, like all children, is resilient, and unwavering. He may not yet know what is going on with him, but he has learned love and, therefore, will. Through all the Rainbow CF Clinic appointments, enzymes before every meal, twice-a-day chest therapies, and being easily susceptible to viruses, Nolan bounces back, smiles, loves and learns. We are lucky he is ours. We can honestly say that year 2 battling CF was significantly easier than year one. We took many trips, we played in public places, Nolan picked up quite a few viruses but he bounced back each time avoiding any hospitalizations which a lot of CFers are less fortunate. Nolan is an energetic toddler and he is loving life! Daily treatments and medications are routine and we are able to knock them out and move on with our day!

Nolan will turn two on March 8th, and we are so very fortunate that he will be able to take a new medication called TRIKAFTA. Many CFers have seen a major improvement in quality of life such as normal sweat tests, better lung function, weight gain, and the ability to get over an illness quicker. Although we are so excited for this we do know it can come with many side effects such as mental fog, behavorial issues, night terrors, and could cause liver damage,. Nolan will have to get blood drawn every 3 months on this medication to make sure it is safe for him to continue to take. While we have fears we will enter this next step with a lot of HOPE! This is NOT a cure. This is not where we stop, this is not enough, this is a temporary medication that can extend his life, but there is so much more out there that the Cystic Fibrosis Foundation is pioneering and funding to make sure there is no more daily medications or therapy but rather, a CURE!

Why donate? You have a lot of causes I am sure you are asked to donate to… and it is hard to be there for every single person going through battles we know nothing about. We remain steadfast in our commitment to continue helping all causes, not just Nolan’s. Please keep us informed on how we can help you and yours, too.

Here is what the Cystic Fibrosis Foundation is doing from a funding perspective, and how close we are to a cure:

MEDIAN AGE IMPROVEMENTS THROUGH MODULATORS AND ADVANCED TREATMENTS

The median predicted age of survival for a child born between 2017-2021 is 53. It is an incredible milestone that reflects decades of scientific progress. Today, nearly 400,000 people in the U.S. live with CF, a 25% increase over the past decade. Adults now represent about 60% of the CF population (meaning, people are living A LOT longer with CF).

To give this some perspective, the median age of survival for a child born between 1997-2001 was 33.

MORE MODULATOR THERAPIES FOR MORE PEOPLE

The number of people with CF who are using CFTR modulator therapies continued to increase. The expanded approval of Trikafta for children with cystic fibrosis ages 6-11 in June 2021 resulted in approximately 1,500 becoming eligible. Ivacaftor was approved for children as young as 4 months in September 2021. More than 23,000 people with CF were taking a CFTR modulator by the end of 2021.

DECREASE IN LUNG T RANSPLANTATION

Lung transplantation remains an option for some individuals with severe lung disease. In 2021, 52 individuals with CF were reported to have received a lung transplant, a dramatic decrease from previous years, corresponding with improvements in health status.

DECREASE IN PULMONARY EXACERBATIONS

Pulmonary exacerbations, when lung symptoms worsen, are common in people with CF. In 2021, a substantial decrease in the number of reported exacerbations was observed, particularly in adolescents and adults.

GENE REPLACEMENT TECHNOLOGIES

This one is the most exciting! Simply put, gene therapy is a technique that modifies a person’s genes to treat or cure disease. Gene therapies can work by several mechanisms: replacing a disease-causing gene with a healthy copy of the gene, or inactivating a disease-causing gene that is not functioning properly.

Gene therapy is a process in which a new, correct version of the CFTR gene would be placed into the cells in a person’s body. Although mutant copies of the CFTR gene would still be there, the presence of the correct copies would give cells the ability to make normal CFTR proteins.

https://www.youtube.com/watch?v=R4Ums7kaCm4&embeds_euri=https%3A%2F%2Fwww.cff.org%2F&source_ve_path=Mjg2NjQ&feature=emb_imp_woyt

The Cystic Fibrosis Foundation is now fully invested in this technology, though there are challenges associated and this is not yet operational. This is the most promising potential future advancement and the best chance at a cure if the replacement can be made permanent. This could also lead to the cure and/or advanced treatment for a number of genetic disorders and is a leading objective of some of the top cancer doctors and scientists right now, as well.

https://www.youtube.com/watch?v=4lFOcKT9c3A&t=3s

We personally have been involved throughout the year in the Foundation. We have heard from researchers working right here in Cleveland at Case Western and University Hospitals how much support they receive from the Foundation to continue to research and develop modulators and one day a cure and without the funding from the Foundation this would not be possible. Our fundraising efforts are crucial to continuing the efforts of these researchers, scientists, and doctors!

We appreciate your support!!