As many of you know, in October 2009, my niece Caroline was born with cystic fibrosis. Cystic fibrosis is a life-threatening genetic disease that primarily impacts the lungs and pancreas - leading to severe lung infections and reduced ability to absorb fats (and more importantly fat soluble vitamins) that, taken together, substantially reduce life expectancy.
Caroline has the Delta F508 gene mutation. This mutation is considered the most severe CF mutation because it affects BOTH the respiratory and digestive systems. We are so grateful that at 18 months, Caroline has remained incredibly healthy, and is a thriving little girl.
Last year, to raise money for the Cystic Fibrosis Foundation, my brother and his friend Matt hiked 30+ miles through the mountains of North Carolina. In support of his fundraising efforts, I made and sold 65 fabric roses - raising $1000. Last year, my brother and Matt raised over $30,000 for the the CFF.
When my brother told me the significance of the phrase "65 roses," I knew that this would be the theme of my fundraising efforts. "Sixty-five roses" is what some children with CF call their disease, because those words are easier for them to pronounce. You can read the story about how this phrase was adopted by the Cystic Fibrosis Foundation here.
This year, my brother is a hike leader and the group of participants has grown from 30 last year to over 80 this year. Last year, the group raised $160,000. This year, they're almost at $300,000!
I was so happy to learn that $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.
This year, in support of my brother's fundraising efforts, I am making several types of roses - sewn fabric roses (two styles in various colors), earrings, hair clips, and sewn t-shirts. Those pictured in this post are a few examples of what I will be offering for sale.
Over the next couple of weeks, I will be sharing more about Caroline's daily life as a kid with cystic fibrosis, as well as a bit about the good that the Cystic Fibrosis Foundation is doing - including how they recently advocated for my brother's family when Caroline lost coverage for her care at UNC.
I hope you will check back for updates. Thanks in advance for your support of my family, and of the Cystic Fibrosis Foundation.
Hooray! So glad you'll be doing this again. :) I'll be following along!
Posted by: Cameron | 04/17/2011 at 09:31 PM
I'm thrilled that you are doing this again and am looking forward to the more informative posts. Our rose from last year was lost for a very long time but Aaron found it in the van!
Posted by: beth | 04/17/2011 at 10:06 PM
I love my rose and get compliments on it every time I wear it. I then tell them the story behind it. I'm so excited you're doing it again and hope to get another.
Posted by: Roma | 04/17/2011 at 10:17 PM
What a good cause ... And what a special way to support it! I can't wait to see all of the items you've come up with! Lily wears her flowers from last year all the time. I am so glad your sweet niece has been doing so well.
Posted by: Tanya | 04/17/2011 at 11:12 PM
I can't wait to get buy a rose! I'm so happy your little niece is doing well. All my best!
Posted by: modernjune | 04/19/2011 at 09:05 PM
I would to buy a pair (or two, or three!) of the earrings when you have them available! What a beautiful and loving project for Caroline and all of those who live with CF.
Kathryn
Posted by: Firedancerk8 | 04/20/2011 at 01:56 PM