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AbbVie is Now Accepting CF Scholarship Applications from Students with Cystic Fibrosis for 2018-2019 Academic School Year

— Scholarship awards $3,000 to 40 exceptional students with cystic fibrosis (CF) for academic excellence, creativity and community service
— Top 40 students compete for public votes to receive one of two Thriving Student Scholarships for a total of $25,000 each
— Nearly $3 million in scholarships awarded to CF students to date through the CF Scholarship program

NORTH CHICAGO, Ill., March 28, 2018 /PRNewswire/ — AbbVie, a global research and development-based biopharmaceutical company, today announced that the 2018 AbbVie CF Scholarship program is now accepting applications for the 2018-2019 academic school year. Undergraduate and graduate students are invited to apply for the scholarship now until May 9, 2018 at 10:00 a.m. U.S. Central time by visiting www.AbbVieCFScholarship.com. Students can apply online or by downloading an application on the scholarship website.

As a part of its tradition of celebrating students with cystic fibrosis (CF), AbbVie will award $3,000 scholarships to 40 exceptional students with CF who demonstrate academic excellence, creativity and community involvement based on established criteria outlined in AbbVie’s application. Each of the 40 selected scholarship recipients will also be given the opportunity to compete for a total of $25,000 for use toward education-related expenses through one of two AbbVie CF Scholarship award categories: Thriving Undergraduate Student and Thriving Graduate Student.

“Learning that I was the recipient of an AbbVie CF Scholarship was one of the most exciting moments of my life. Growing up with CF, I was surrounded by an incredible team of doctors, clinicians, and nurses that worked to make sure that I was getting the best care possible,” said Briana Hansen, 2017 Thriving Undergraduate Student. “Now, with the help of the AbbVie CF Scholarship, I’m pursuing a career as a physician assistant, so I can do my part to give back and help other patients in need.”

AbbVie will announce the 2018 Thriving Undergraduate and Thriving Graduate Scholarship recipients in the fall of 2018. The Thriving Undergraduate and Graduate Student Scholarships are granted based on a combination of exceptional academics, achievements, and creative presentations. These awards are also determined, in part, by public votes cast over a two-week voting period to be announced in the fall.

“It’s amazing to witness the accomplishments that students with CF have achieved over the years. Together with the advances in modern medicine, these students are making incredible strides in their own lives, in their schools and in shaping a world in which living with cystic fibrosis doesn’t mean you can’t achieve your goals,” said John Duffey, vice president, U.S. Specialty, AbbVie. “AbbVie is proud to be part of such a strong community, and to continue in its support of these incredible students.”

The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. Today, more than half of the CF population is age 18 or older.1 For more information about the scholarship, please visit www.AbbVieCFScholarship.com.

About the AbbVie CF Scholarship
The AbbVie CF Scholarship was established 26 years ago in recognition of the financial burdens many families touched by CF face and to acknowledge the achievements of students with CF. Since its inception, the scholarship program has awarded nearly $3 million in scholarships to over 1,000 students. The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. As of 2016, more than half of the CF population are 18 years or older.1 Click here to learn more about the AbbVie CF Scholarship and 2017 Thriving Undergraduate Student Briana Hansen.

It is not necessary for scholarship applicants to have taken, currently take, or intend to take in the future, any medicine or product marketed by AbbVie, and this is not a consideration in the selection criteria. More information about the AbbVie CF Scholarship criteria and application can be found at www.AbbVieCFScholarship.com.

About AbbVie
AbbVie is a global, research-driven biopharmaceutical company committed to developing innovative advanced therapies for some of the world’s most complex and critical conditions. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to markedly improve treatments across four primary therapeutic areas: immunology, oncology, virology, and neuroscience.  In more than 75 countries, AbbVie employees are working every day to advance health solutions for people around the world. For more information about AbbVie, please visit us at www.abbvie.com. Follow @abbvie on Twitter, Facebook or stories.abbvie.com.

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

To continue reading, visit CFF community blog.

A Dutch Company on the Quest Against Cystic Fibrosis

An interview by:  Clara Rodríguez Fernández

Daniel de Boer founded ProQR in 2012 following a strong determination to improve the lives of people with cystic fibrosis. We started ProQR Therapeutics for a very personal reason,” he told me. “Eight years ago, my son was born, and diagnosed with cystic fibrosis. At that time, I was a serial entrepreneur in IT. I decided to make a career switch and start a company to develop drugs for cystic fibrosis, but then also for other genetic diseases.”

One would think that a person without a background in biotech might have it difficult to succeed, but de Boer is not the only to have so far successfully undertaken this endeavor. Over in France Karen Aiach built Lysogene to treat her daughter’s rare genetic disorder, while in the US the story of John Crawley and his company Amicus Therapeutics, founded to help his two children’s diagnosis, went so far as to inspire a movie. The determination and motivation of these parents seem to overdrive any challenges they might have faced because of their limited experience.

De Boer set out to create a business plan for his new company and found out that there was already quite a lot of activity, especially in approaches using small molecules or gene therapy.“We decided that we really wanted to add something new to the space, and take a completely novel approach.”

So he started looking for a new technology, and he found it. “Around that time, I met for the first time with some people in biotech, including the CEO at Alnylam, John Maraganore, and we talked about how they used RNA approaches for genetic diseases,” says de Boer.

Technologies targeting RNA are quite new compared to those that target DNA such as gene therapy. But RNA-based treatments have started to gain traction in the last few years. There are multiple ways that RNA can be used as a therapeutic, but its distinctive advantage over gene therapies and the likes is that it does not permanently change our genetic makeup, making it possible to reverse its effects.

Today, RNA technology is being tested in multiple rare diseases caused by genetic mutations, such as hemophilia, porphyria, or iron overload disorders. I thought, ‘if you can do that for all these other genetic diseases, why not for cystic fibrosis?’” says the Boer. “With that in mind, we started ProQR.”

For the rest of this article, please click here.

Thanks to The Boomer Esiason Foundation, CF Roundtable’s new Pearl Sustaining Partner

We would like to thank The Boomer Esiason Foundation for its continued support at the Pearl Sustaining Partner level. A special thank you goes out to BEF volunteer Jerry Cahill for helping make this grant possible. Because of this support, we can provide all of our CF Roundtable programs such as:

The Boomer Esiason Foundation helps support the CF community via its programs including:

  • Scholarships – BEF has numerous scholarship opportunities available
  • Lung Transplant Grant Program – covers transportation, housing and other expenses not covered by insurance that are related to transplant
  • You Cannot Fail – A motivation program that empowers people with CF
  • CF Podcasts – podcasts covering a wide variety of CF-related topics produced by Jerry Cahill
  • CF Wind Sprints – short videos by BEF Volunteer Jerry Cahill with tips for living with CF
  • Gunnar’s Blog – a personal blog of Gunnar Esiason, Boomer’s son, who has CF
  • Hospital Bags – goodie bags provided to CF patients of all ages during hospital stays
  • Team Boomer – encourages people with CF to be active by participating in events and helping to fundraise
  • Bike 2 Breathe – An annual 500-bike tour to raise awareness for the importance of exercise with CF
  • CF Century Rides – A personal goal of Jerry Cahill’s. Jerry is determined to do a century ride (100 miles bike ride) in all 50 states for CF!
  • CF: Live By Example – A pilot program where people with CF who are living, breathing, and succeeding will ensure parents of newly diagnosed children that CF is only a bump in the road, not a death sentence.
  • Club CF – an online forum where people with CF can share their stories

For more information on The Boomer Esiason Foundation please visit: https://www.esiason.org/

Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

To continue reading this article please click here.

Exercise for Life Scholarship

When it comes to #CF, exercise saves lives — and now it can help you earn money towards your education. BEF’s Exercise For Life Scholarship will be awarding $10,000 scholarships!
All applicants are required to complete a daily run log from March 12th – June 1st and should be training for the 1.5-mile qualifying run. Candidates will be judged on the basis of time. Get ready to put those miles to use!
Deadline: June 1, 2018
Amount: $10,000
**IN ORDER TO QUALIFY, YOU MUST START YOUR TRAINING LOG ON MARCH 12TH**

Bustle for muscle

by Brennen Reeves

A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.

I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.

My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.

I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.

I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?

Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.

I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?

“7years. Brennen your body needs more time to heal”
Ok.
—–
Wait,
or could it just be my body?

Introducing our Newest Board Members!

Rachel Steinman

Hi! My name is Rachel Steinman, I’m 29 years old, and I’m super excited to be a member of the USACFA board.

I was diagnosed with CF at the age of 16 and have been very fortunate to have had fairly stable health throughout my life thus far. 

No matter one’s level of health, USACFA is an important outlet for our community. CF is a complicated disease and it affects every patient in a unique way. For me, having an online community has helped me both learn more about this disease, and feel less isolated in the process. 

I graduated from the University of Miami with degrees in Journalism and Sociology in 2009, and I spent a year volunteering with Americorps shortly after. A few years into my career I decided to quit my job and move to Tel Aviv, Israel for a change of lifestyle and a marketing position with a tech company. I moved back home to NY after a year to be close to my family.

I grew up on Long Island and currently reside in NYC with my boyfriend where I continue to work in digital marketing. I enjoy cooking, traveling with my boyfriend, and spending time with friends and family.

I believe I’ve been able to maintain good health with the help of a great team of doctors at Columbia Presbyterian in Manhattan, a positive attitude towards life with CF, lots of acupuncture and cupping therapy, and a very loving, supportive family.

As a new member of the board, I’m excited to be joining both the blog and social media committees, so please look out for future posts from me!

Amy Sylvis

Hello! My name is Amy Sylvis and I am so grateful to be a member of the USACFA board. I have been an avid reader of the CF Roundtable since the late 90s and I am forever grateful for how much I have learned over the past 2 decades from the publication. I fiercely believe that all people with cystic fibrosis should have access to the best care and latest knowledge – and I’m thrilled to be able to contribute to this prestigious organization. My specific passions include hemoptysis, aspergillus, CFRD and decreasing quality of treatment variation across CF centers in the United States.

I am 36 years old, diagnosed at 6 months old. I earned my Bachelors of Science in Business and Bachelors of Arts in International Relations from the University of Southern California as well as my Masters in Business Administration from USC. I have worked full time mostly in biotech and pharma, which continues to be my passion despite my health forcing me to leave work in 2017. In my spare time you can find me reading non-fiction, watching college football and traveling. My husband and I were married in August 2017, and we live in Los Angeles, CA with our little cocker spaniel/dachshund mix.

Check out Jerry Cahill’s new blog: Jerry Unplugged!

Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!

Who Am I?

I’m Delta F508. I’m R117H. I’m a cystic fibrosis patient. I’m post double-lung transplant by 5 years and 10 months.
I am all that and so much more. I am Jerry Cahill: athlete, coach, and friend. I have an unrivaled joie de vivre. I am positive, relentless, kind and generous. I am a man, who just happens to have cystic fibrosis. I don’t accept mediocrity. I never give up and always believe You Cannot Fail.
I was born one of six kids and, although I had CF, my parents treated me just like the others. After I was diagnosed, my mother wanted to shelter me, but my dad said, “If his life is going to be shorter, I want him to spend it with his brothers, having fun and being normal.” My dad believed that “you cannot fail as long as you try,” and I made it my life’s mantra.
I attended college and went to nationals in pole vaulting. It isn’t that I didn’t have issues because of CF, it’s just that I chose not to let them get in the way and be roadblocks. They were just detours on the way to my dreams. I went on to have a successful career while juggling the demands of CF. I never have and never will let the disease define me. The more it progressed, the more I pushed back.
Finally, nearly six years ago, at age 56, I needed a lung transplant and received one thanks to the unconditional love and generosity of a grieving family. I am grateful to my donor every day.  Continue reading…

Why I Do What I Do?

Because I can…
I believe in giving back & passing it on. I’ve been given a platform, so I use it to share what I’ve learned and experienced to benefit others. I really like the quote from the movie, The History Boys: “Pass the parcel. That’s sometimes all you can do. Take it, feel it, and pass it on. Not for me, not for you, but for someone, somewhere, one day.” I don’t do all this for myself; I do it to give hope to others, to inspire them to do more, fight harder, and be the best they can be. Everyone has limitations, but I want to inspire every person to go out and be the “hero of your own story.” Continue reading…

Doctor, Doctor!

I walked into the office the other day while Boomer was there and we began to make small talk. He asked how I was doing and I told him I had to see the doctor for my knee, because I’m having knee-replacement surgery in March. Boomer started to laugh and asked, “Just how many doctors do you have? You’re always seeing some doctor, and you act like it’s no big deal. You know, not everybody sees as many doctors as you do.”
“Boomer, I have CF! I’ve had a transplant. I have doctors but not that many, really,” I replied. Continue reading…

6 ways to get back into shape after a CF-setback

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience setbacks in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF.

Continue reading 6 ways to get back into shape after a CF-setback