Save the date - May 19th at Moonlight Beach for Cruisin' for Clare's 9th Annual Great Strides walk.
Dear Friends and Family,
It's that time of year again...to walk for awareness of Cystic Fibrosis. Please consider joining us on May 19th at 10am (check in 8:30am) for our 9th Great strides walk. This year, the walk has returned to Moonlight Beach! Whether you plan to walk in tennies or flip flops, we’ll see you there!
For those of you new to the walk, our family walks to support Cystic Fibrosis because our daughter Clare was diagnosed with CF at birth. Our boys do not have the disease, however, many families have more than one child with CF. We walk for Clare, and all the families working daily to keep their CF’ers healthy.
For our family, this is a momentous year. The fundraising we have done for the CF Foundation has made it possible for a new triple combination drug therapy showing incredible results to be available by the 1st half of 2020. Once the FDA approves this drug for adults, the pediatric drug will hopefully follow in 6 short months. In addition to this drug hopeful, the CF Foundation also has additional anti-inflammatory therapies and other options to assist CF patients. Our personal Great Strides walks have raised over $100,000 in 9 years, and 90% of those funds have gone to research & finding a cure for CF.
We ask our friends and family to support us again this year with a donation to our Great Strides walk, in hopes that by the end of 2020, Clare will have a new option for her CF preventative treatments. The triple combination drug mentioned above has a 13% increased lung function for people living with CF that already have deteriorated lung function.
For those of you that do not get to see Clare every day, she is a superstar! She is managing her health as if she were an adult. She knows how many enzymes to take before her meals and she can list all of the medications she uses and why she uses them. She takes an hour out of her day to manage her health. She does two vest treatments a day, nebulizer treatments, and swallows 25+ pills on a daily basis to name a few. She is BRAVE during her blood draws & tummy aches. CF doesn’t slow Clare down. She has only missed two weeks from school due to her health. Thanks to all of this and all of you, Clare makes living with CF feel normal.
Clare’s passions include spending time with her friends, sleepovers, playing the Ukelele, art of any kind, baking, watching baking shows, Girl Scouts, reading, playing sports, and taking our dog Baxter to the beach. She is lovable and spirtited all in one. She makes breakfast in bed for us on random mornings. The breakfast always includes coffee, m & ms, and a note. She is loving and Loved.
Please consider donating to Cystic Fibrosis in 2019!
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.