Lulu's League

This is our second year joining the Cystic Fibrosis Foundations Great Strides walk!  We walk and fundraise for our salty and sweet little Lulu.  Lulu is two years old now, and is one of the small percent of CF’ers with two rare mutations.  This means that she is NOT eligible to take any of the current miracle drugs that have recently become available to many others with CF.  The Cystic Fibrosis Foundation has helped us every step of the way! Between providing us with as much support and information as possible during her diagnosis and difficult 2 1/2 month NICU stay, to helping fight our insurance for coverage of necessary supplements via their Compass program, and even provided her Gastrointestinal doctor with specialty CF training via their former DIGEST training program. This Foundation has been sooo important to us, and is tirelessly working to find and fund treatments that can ease and extend Lulu’s life! Please join us on May 19th on the beautiful grounds of the Lyndhurst Mansion to walk for Lulu’s future, and ALL those living and coping with this disease.  If you are not able to join in person, please consider donating to Lulu’s League.  Every little bit counts! We are so grateful for all of your generosity and support!