Our son Carson was diagnosed 10 days after birth with the genetic disease cystic fibrosis (CF). Having no family history and only minimal awareness of the disease, we quickly overcame the initial shock and started to educate ourselves. While CF is an extremely serious disease, there have been incredible advances in research, awareness and patient outlook. In addition to seeking out the best care possible for our son, we also focused on how to help find a cure for CF and quickly came across the Cystic Fibrosis Foundation.
The CF Foundation is the primary funding source for research and therapeutic development. Four of the medications Carson is on were made possible with support from the Foundation's clinical trial network. One of those drugs, Orkambi, has had the biggest impact for Carson's weight gain and pulmonary function. He was a patient in the stage 3 clinical trial which led to FDA approval.
We share the same mission as the CF Foundation. It is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.
History of Carson's Crew
- Participated in a variety of events across Ohio raising $20k
- Great Strides (2009-12)
- CF Climb (2009-13)
- Started and grew the largest non-foundation CF fundraising event in the Dayton area called Flying Towards a Cure raising almost $120k in 6 years
- University of Dayton Arena Flight Deck (2011-13)
- Warped Wing Brewing Co. (2014-16)
- Partnered directly with the CF Foundation in two successful Dayton based events
- Brewing Up a Cure (2017)
- FestivAle (2018)
- Became a non-profit corporation in the State of Ohio on 1/13/19 and an IRS recognized 501(c)(3) public charity on 3/1/19
Based on feedback we've received, Carson's Crew would like to get back to the personal feel of the first six years of our Flying Towards a Cure event. We'd also like to leverage the advantages of having our own 501(c)(3) organization moving forward.
We will continue to support the CF Foundation as our primary beneficiary. They are leading the charge to find a cure and we have seen the benefits in Carson and many others. However, we'll also have the flexibility to donate to a pharmaceutical, hospital, support or education initiative if we choose to.