Holly Carroll-Owen

Hi Friends, Family and Supporters -

9 years ago we found out that our son Sam had Cystic Fibrosis, a genetic disease that primarily affects the respiratory and gastrointestinal systems. As there are only an estimated 30,000 people living with Cystic Fibrosis in the United States it was a great relief to find out that there was wonderful support system in the form of the Cystic Fibrosis Foundation. In those early days the CFF gave us resources and a champion to work alongside of us as we navigated our way through learning about the disease and all of Sam's needs.

Over the years Sam, like many of those with Cystic Fibrosis, has struggled with weight gain and receiving proper nutrition. Luckily the CFF was there along with our CF accredited Care Center to help with how to best get Sam what he needed. A large part of any CFer's routine is taking enzymes before every meal, receiving daily nebulized medications and wearing their vest for chest physical therapy. All of these various treatments and therapies can cause a financial burden on a family and can be overwhelming to weave through the various approvals needed for insurance to cover the medications and equipment. Seeing this need the Cystic Fibrosis Foundation created Compass for patients and caregivers, Compass has been an amazing help to our family and others by taking ownership of all types of issues such as insurance, and pharmacy conflicts as well as providing access to information that otherwise the family may have had to spend valuable hours researching.

Through all of this I count our family lucky as we are able to live in a time where due to advancements Sam is able to live a relatively normal life. And that we are able to cherish our little moments in life as we know that everything could change if Sam gets that one "bad respiratory bug". We are lucky because we live in a time of hope when others before us had much shorter life expectancies and insufficient care because there was no funding. But today we have new medications and treatments available like Trikafta that help to treat the underlying causes for CF and lead to a better quality of life!

These new medications are a big step for helping to combat this devastating disease however we are still losing many with Cystic Fibrosis and now it is more important than ever to keep our momentum up in this fight. To do so we need your help to work toward a future where no other child or adult loses their fight against Cystic Fibrosis.

Please help today by giving a donation to the our Great Strides Team - Sam's Superheroes as we work to help make CF stand for Cure Found!

Thank you! 
 
Holly