It has been quite a week for us in the Cystic Fibrosis community. With only 28,000 patients in the United States, our collective voices were the "shot heard round the world".  And..with all respect...it was about time!

Our small but mighty community kicked off the week Sunday when our girl, Liz Shuman appeared on the Today Show.  Back in April, Liz's best friend Nicole created the group OutRun38 on Facebook as a way of celebrating athleticism and encouraging each other to continue to lace up their sneakers, and run a collective of 38,000 miles before Liz's 38th birthday.  What started as a small group is now 4000+ members strong, dedicating miles and celebrating achievements in athleticism.  Together, the nation had insight into the disease and the group is still adding members thanks to the publicity!

Media Folder: 

Media Root

When Vertex released the phase 3 clinical data for us belonging to the Delta 508 sorority, it was as if a collective deep breath resounded through the community, for the 2nd time this week.  Finally a drug targeting the underlying cause of the disease, that may potentially benefit the majority of CF patients.  Celebrations across the nation started at 6:53 am EST and as the stock price soared, CNBC and Forbes created their own media storm.  Although Wall Street doesn't generally pay attention to the rare and orphan disease market, Vertex shares went up over 53% and investors took notice of the "rare disease company and the patients who could live longer, healthier lives". 

Later that day, the CF Foundation launched their kick off events nationwide for their "Finest" campaign.  Highlighting achievements of their local chapter volunteers, business professionals, and patients- banding together to raise money for research leading to more scientific and lifestyle breakthroughs.

Now that one company has proven they can figure out a combination drug that may help, more are stepping up.  Cystic Fibrosis when I was born (1987) was a closeted disease that nobody knew of.  Through the loud voices of patients, caregivers, doctors, pharmaceutical companies, biotech companies, friends, lovers, and family....CF is not a closeted disease.  We're a community to be reckoned with. 

And of course, as the week comes to a close, the CFLF has been working tirelessly to continue to encourage athleticism - even though there are significant improvements in our world, there has never been a better time to be a CF Athlete.

Freshly released from my 14 days in the hospital, I have been more inspired to kick it up and work it out.  But...the cough.  The cough still lingers and will always exist in my life.  My thick sticky mucous starts to "unattach" from my airways about 10 minutes into a work out, and for nearby gym-goers...the confusion about whether or not I have the plague can be down right stressful.  The treadmill on each side of me suddenly becomes vacant, the stares begin, the grouchy woman asks me if I need a cough drop, and the man who looks like he can bench me suggests politely I wipe down the machine with a towel. And on some rare days, a sweet older woman, will offer me an extra bottle of water and a kind smile.

"Why my terrified treadmill switchers, I didn't want you to run next to me anyways....I'd hate to make you look bad."

"Why yes Ms. Cough-Drop Toting Queen, I'll take two.  And I prefer lemon Ricolla's, if that is not too much trouble."

"Hi Mr. Bench Press Bruno, I'll gladly wipe off my machine after I cough on it.  P.s. would you like me to get you a towel?  Your sweat is grossing me out." 

"Thank you Ms. H20, I appreciate your understanding.  Water doesn't help, but the look in your eye that I am not an alien gives me enough motivation to keep coughing along."

I cough because I can.  I cough because I ran.  Our voices are getting heard and there has never been a better time to laugh at the snide remarks, hug those who run with us, and shatter our PRs.  We got this!  And we are just starting!! 

P.s. Despite the cough, I hit my PR....