Since I first volunteered at the event Rockin' for a Cure for my friend Gretchen who worked at the Cystic Fibrosis Foundation (CFF) and heard the amazing 10 year old Emily speak I knew CF was a devastating disease that needed to be cured and I was just the person to add to the team to help make that cure happen. I started working at the CF Foundation in 2010 and since then I've made unbelievable connections with people living with cystic fibrosis (like the people in my photos) and I can't imagine a world without them. Cystic fibrosis (CF) is a fatal genetic disease that affects lung function, the digestive system and requires daily in-depth time consuming treatments and therapies. In the US there are about 30,000 children and young adult patients and 10 million carriers of the CF gene. There is no cure and the current median lifespan is now in the 40s. Better than what it could be, and certainly better than it used to be, but still unacceptable in my book. Please help me change the lives of all of the people I have come to know and love.
This year, I'm once again fundraising for Great Strides. It looks a little different this year during this PANDEMIC, we will not be walking together in person, but we all know now more than ever what it must be like to have CF - wear a mask in crowds, keep a 6' distance, stay away from sick people, etc.
Please make a donation today, no matter how small... it will be a major help! CFF does not waste your money as they are a careful steward of every dollar and are an accredited charity of the Better Business Bureau's Wise Giving Alliance. AND it's 100% tax-deductible which will be helpful next April when tax season rolls around again.
Please help me ensure my friends live longer and healthier lives. With the FDA's approval of Kalydeco, Orkambi, Symdeko and Trikafta, as well as the ongoing clinical trials for new drugs, the dream of people like Emily, Palmer, Auburn, Russ, Chris, Vivi, Maya (just to name a few of my CF Fighter friends) living a completely full life is closer and closer to becoming a reality. Kalydeco, Orkambi, Symdeko and Trikafta are changing lives, but they are still a daily medication and there is a small percent of our patient population who will not benefit from drugs like these like my friends Catherine, Simmons and Austin. WE NEED A ONE-TIME CURE FOR ALL PEOPLE LIVING WITH CYSTIC FIBROSIS. These medications are proving to CORRECT THE BASIC DEFECT IN THE GENE which has NEVER been done before for any genetic disease so this has huge implications not just for CF but for all genetic diseases. So this is a major step in the right direction, but we have to keep working and fighting to make a cure a reality.
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation!