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Welcome to Owen Blank's Page

Owen Blank

Owen Blank

I am honored to be recognized as a inductee of the 2019 class of The Peachtree Society, a class of young professionals dedicated to raising money in the fight against Cystic Fibrosis, a cause that, as a patient myself, I’m very close to.

I’ve lived with CF for years, and while I wouldn’t say I’ve specifically hidden my story, I wouldn’t say I’ve exactly jumped at the opportunity to share it. I realize now, that that was the wrong attitude to take. It wasn’t until a few months ago I realized that I had been letting my personal reservations keep me from doing what was really important, raising awareness for over 30,000 others across the country living with this nasty disease.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. I was diagnosed with CF at the age of 13, which is what would be considered an incredibly late diagnosis. While this was a lot to take in as a teenager, this late diagnosis was luckily a sign that my case was more mild than most. I certainly took this as great news; nevertheless, I began on what was, and still is a strenuous treatment regimen.

I’ve longed searched for an analogy to express how living with CF feels until I recently heard a friend give a great explanation. He said that living with CF like trying to breathe while holding a wet napkin over your mouth. The spectrum of CF cases varies widely, so this sensation is more severe for some than others. However, this feeling couldn’t be more accurate. As one might imagine, trying to combat this feeling requires tremendous personal upkeep. For many patients, this involves multiple hours a day spent doing airway clearance treatments and chest therapies, which encompass inhaling various medicines/solutions, wearing a vibrating vest (which helps to shake mucus from the lungs), and taking a list of various oral or inhaled antibiotics, which for many is a mile long. This doesn’t include exercise, and routine monthly or quarterly recurring visits to specialists. For me personally, my prescribed treatment regimen equates to two total hours of breathing treatments per day, an hour in the morning and an hour in the evening, as much exercise as possible, and at least four visits per year to my amazing care team in Augusta, Ga.

While this sounds tedious, I’ve come to know this as normal, and my experience pales in comparison to what many patients face on a day to day basis. Patients with more severe cases require up to four treatments per day, which as one can imagine, greatly inhibits the ability to enjoy and participate in normal, everyday activities. For many patients, working a normal job, attending school or even maintaining a normal social life aren’t realistic options. And this is just the time spent doing preventative treatment. Should a CF patient require a hospitalization due to infection, these stays can last multiple weeks at a time.

Though treating CF takes a lot of work, in regards to my personal health, I’ve been luckier than most. Somehow or another, I’ve also found myself the beneficiary of many incredible therapy advancements made possible by the CF Foundation.

In conjunction with the Foundation in 2012, Vertex Pharmaceuticals released Kalydeco, the winner of Forbes’ “breakthrough drug award” and voted “the most important drug of 2012”. This new miracle drug had a monumental impact on lung function and weight gain for many patients, increasing my personal lung function by roughly more than 10%. For me, the changes I experienced were night and day. I instantly noticed a dramatic change in my energy level as I was breathing easier, eating more, gaining weight, and increasing both my cardiovascular and overall strength. At the time, I was fortunate to be a member of the University of Georgia’s Men’s Swimming and Diving team, so for me, the physical phenomenon that Kalydeco provided was nothing short of an absolute game changer.

Despite the incredible success that is Kalydeco, the unfortunate issue is that it was, and still is, only available to ~10% of CF patients. Since Kalydeco’s release in 2012, a second iteration has been released, and there is currently a third in FDA clinical trials-this therapy of which will finally address the underlying cause of CF for more than 90% of patients. While the strides and pace of new research and innovation by the CF Foundation is widely regarded as the industry gold standard, there is still not a treatment for ALL who live with CF and while treatments will help aid our fight against CF, the Foundation will not stop until there is a one time CURE for every single person living with this disease.

As I’ve grown to know many in the CF community, I constantly think about how lucky I’ve been. As a patient, I’ve witnessed so many truly amazing advances in the combat of this disease. While I can say I would never wish to live with cystic fibrosis, it has been amazing to be a part of such groundbreaking progress that has revolutionized life for thousands of patients. Unfortunately for many patients, these developments have with not yet come, or did not come in time. Growing up with CF, I’ve had the pleasure of meeting other patients and families in the community, many whose symptoms are far greater than mine. Over time, I’ve seen many of my CF friends live in and out of the hospital, an event that I’m so grateful to say I haven’t yet experienced. I’ve known many families that continue to battle this disease and am saddened to say, many that have lost loved ones too soon.

Had I not been the recipient of many new treatments and therapies along the way, my story may be very different. I’ve experienced many difficult days, weeks, even months, and I’d be lying if I said there haven’t been times that I’ve complained. However, while my road hasn’t exactly been easy, it’s been a cakewalk in comparison to the challenges many patients face.

So… my "why"? I’m raising money for those that haven’t had it easy. For the thousands of patients that are still desperately waiting on their breakthrough. For the patients that are fighting to stay healthy until a cure is found. Most importantly, I’m raising money so that we stop losing loved ones to this disease that we are so close to curing.

The work and research of the foundation and CF community has been nothing short of incredible-but the job is not finished until a cure is found.

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$11,491.25
raised of $10,000 goal
 

Recent Donations

$150.00
1. Andrae Turner
$100.00
2. Craig & Debbie Spooner
$100.00
3. Sommer Frazier
4. Grayton Pinkston
Thank you so much for standing up with me to find a cure, brother! So glad we're on the same team! - G
$100.00
5. Craig & Marsha Swanson
$100.00
6. Nancy Coleman
This donation has been made to help Owen and support his cause and research for a cure. From Nancy Coleman and Mark Goshdigian