Saturday, May 9 will be the Great Strides Walk for the Cystic Fibrosis Foundation in Verona, NJ. This will be the 10th year my family is participating in a Great Strides Walk to raise money to find a cure for Cystic Fibrosis, or CF. So far with all of your help, we have raised over $100,000 to help find a cure for Cystic Fibrosis.
I am sure you all know by now that both of our sons (Matthew age 15 and Mitchell age 10) are living with Cystic Fibrosis. Matthew was not diagnosed until a few months after Mitchell was born. Mitchell was diagnosed at month old.
Cystic Fibrosis is a genetic disease. Life expectancy for those born today is between 38-41 years of age. This means that by the time Matthew finishes High School in 2 years, he will be almost middle age. Fifiteen years ago (2004), when Matthew was born, the life expectancy of those living with CF was Eighteen years old. But now, researchers have been able to more than double the life expectancy of those living with CF. Imagine what is possible in these next 15 years.
Everyone that has donated in recent years can say they are part of creating a cure. One does not exist yet, but researchers are so close. For the past few years both Matthew and Mitchell were taking a new drug called Kalydeco. This new drug works at helping the cells to finish the task they are unable to complete. The drug targets specific changes and is only available to 4% of Cystic Fibrosis patients, luckily both our sons fall into that category. Recently additional drugs have been developed to target CF mutations.
It is not a cure, but it is a new treatment that appears to help fix the problems. An example of how well it works can be seen in the results of their Sweat Test. A sweat test is one of the tests done to determine if someone has Cystic Fibrosis. The amount of salt in the sweat is measured. A normal test comes back with a score around 15, but Mitchell was over 100 when he was born. After being on Kalydeco for a year, he was recently re-tested to see the effectiveness of the drug, and the test showed his salt level to be in the low 60’s. That does not mean he is cured, but it means that while taken this new drug, every day, twice a day, it is helping lower the amount of salt in his sweat, and in the mucous in his lungs. 60 is still very high, but it is better than 100. This drug and treatment would not have been possible without the Great Strides Walk and the money donated by all our friends and family. Cystic Fibrosis is called an orphan disease. Not enough people have the disease to qualify for federal grants. The only way to find a cure or new treatments is through individual donations and fund raising.
If you can, please donate to our team and help us find a cure for Cystic Fibrosis.
Join our team and help add tomorrows!
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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.