The CF Smackdown is a growing team dedicated to ending CF this decade.
The Smackdown was launched by one family, but it is not about one family. It is about every family affected by this disease, and we’re all better off standing up against CF together. And doing something.
That’s what the CF Smackdown is about. Patients, families, groups, companies, organizations, heroes– standing up, and doing something to help win this fight.
As an example, the founding members of the Smackdown are parents of a child diagnosed with a form of CF. Their daughter is doing better than her early tests predicted (more on that later), but like everyone touched by CF, they were initially thunderstruck by the news from their doctor. For months, they struggled to find their footing, but within a year, they had helped forge a significant research collaboration, helped add a CF genotype to a clinical trial, and founded the CF Smackdown.
The Smackdown first appeared on the web as a “cause” on Causeway in Chattanooga, TN, and here is an excerpt from the original text:
Excerpt:
The world goes dark, for a time, when the doctor says your baby girl has been diagnosed with cystic fibrosis.
But times are changing. Decades of research and development suddenly began yielding breakthroughs in 2012; and for families touched by the disease, the world is getting brighter.
First, a few grim background facts: Cystic Fibrosis (CF) is a chronic, progressive, and ultimately fatal genetic disease, primarily damaging the respiratory and digestive systems. A diagnosis of CF can be a patient’s, and parent’s, worst nightmare– CF is indiscriminate, cruel, and, until now, incurable.
But in January 2012, CF got its first well-deserved kick in the crotch by American researchers and the FDA, with the approval of Kalydeco, a medicine that can largely control symptoms in a subset (4-5%) of CF patients.
What’s significant about this CF crotch-kicking, and the underlying research, is that:
It addresses the root cause of CF, not just the symptoms.
Its reach will extend to a broader subset of CF patients (clinical trials are underway).
It is only the beginning.
In other words, the CF smackdown has begun. What we’re learning is cracking the armor of this disease, and with your help, the symptoms of CF could be almost fully treatable, and potentially preventable, within the decade.
Profile: one of our co-founders
Stephen Culp is a husband, father, community servant, and entrepreneur.
Personally, Stephen is the father of Lily (pictured below), whose CF journey has been a roller coaster ride, from "classic" CF, to "atypical CF", to "CRMS" (her genotype is 621+1G>T / 5T(TG)13). Whatever the case, and whatever you call it, it was enough to freak us out, piss us off, and inspire the launch of the CF Smackdown, focused on neutralizing this cowardly and cruel disease.
Professionally, Stephen is cofounder and principal of Smart Furniture, Delegator.com, ProDiligence, PriceWaiter, and the Chattanooga Renaissance Fund.
Civically, he is co-founder of the non-profit ventures Chattanooga STAND, Chattanooga3D, and Causeway, as well as a former U.S. Navy Reserve Officer and Peace Corps Volunteer. Stephen has also served as advisor or director for Chattanooga, Tennessee’s The Company Lab, The Jump Fund, River City Company, InnovateHere, The Gig City initiative, the Trust for Public Land, CreateHere, the Chamber of Commerce, the Theatre Centre, Friends of the Festival, and the local American Lung Association. In 2010 he represented the Chattanooga region as a Marshall Fellow in Europe, and in 2012 became a trustee of the Lyndhurst Foundation.
Academically, Stephen was a student and varsity athlete at UNC-Chapel Hill, and also studied at Stanford Law School (J.D. ‘91), the Stanford Center on Conflict and Negotiation, the Institut d’Etudes Politiques in Paris, and Michigan’s Ross School of Business.
Before starting a family, he was fortunate enough to be in Eastern Europe when the Wall fell, Silicon Valley when things got crazy, and Chattanooga when its Renaissance began. Better than all of that, along his wife and daughter, and thousands of others fighting the good fight, will be witnessing the end of cystic fibrosis, this decade.
Their daughter Lily, ready to lay the Smackdown the morning of a CFF Great Strides Event. How is Lily doing? While some of Lily's early tests pointed to "classic" CF, her numbers have actually improved, which is unusual, resulting in a more ambiguous "Atypical CF" or "CF-Related Disease" diagnosis. Whatever the case, it's been enough to motivate the Smackdown to put CF — "classic" and otherwise — squarely in its sights.