Pushing Through the Fear – Guest Blog By Andrea Eisenman

By Andrea Eisenman

So many fears, where do I begin. Let’s start with my impending trip to Seattle from NYC. I like to travel but it gets complicated. How much room in my suitcase do I have to pack my myriad of machines and meds? And how much will I forget, despite my thorough list? I learned I had to put obvious things on my list like a hairbrush after I forgot that a few times. But when it is easily purchased at a drug store, no biggy. When it is my immune suppressants or a nebulizer, that is harder to replace.

I now have a lot more machinery to tote around when I leave home. I have my CPAP, my percussor and my inhalation machine and a facial steamer for my sinuses, plus my Neti pot for nasal lavage. These things become cumbersome and traveling light is not an option, I have to check my bag. So, planning is key for several days prior to take off. I am in that phase now. Packing it all. I bring enough meds for twice my travel time. My last trip to Seattle happened during 9/11. I could not fly home for a week. Luckily, I had an extra 10 days of medications to cover me.

My dad asked if I was up to the flight, it is a longer one than I have taken in many years. My answer is, I don’t know. I am fearful as I know I have lymphedema and even though I wear compression tights when I fly, it is less than comfy and I will swell in my upper body. I do have a compression machine for upper body swelling but it is way too big to bring. Will I be ok not using it for a few days? I am hoping the answer is yes. But because I do not know these things for certain, I have anxiety. And I worry I might get sick either from the flight or anytime during my trip. I do wear a mask in flight and try to stay as hydrated as possible in order to keep well. And of course, I will wipe down the area near my seat with cleaning wipes.

But in order to live a life, I have to take some risks. I had wanted to go to Seattle for a few years. It is therapeutic to get away once in a while and I had not traveled too far from home while my mom was alive. I wanted to be near enough if she needed me. I no longer have that worry. And maybe I used that as an excuse so I am now pushing myself to go on this trip. I know I can be resourceful and my doctors are only a phone call away if I get sick. There is a great CF center there and my friend is sensitive to my CF needs. When we were in college together she gave my CPT when I let her.

I find that when I push myself beyond my fears, I feel triumphant and am happy that I conquered them. Sometimes one has to get out of their comfort zone, even if it means wearing horribly tight pantyhose for six hours on a flight! I know it will be worth it and I can bond with my friend. I will feel like I accomplished something worthwhile. Maybe my next trip will be to Europe.

Cystic Fibrosis Podcast 195 Summiting Mount Everest and Denali with Nick Talbot

In the latest CF Podcast, Nick Talbot shares his incredibly unique journey with cystic fibrosis. From being diagnosed at the age of 13 to his latest climb – a trek up Denali, the highest point in North America – he constantly challenges himself to reach for his dreams. Nick stresses the importance of pushing one’s own personal limits and never being scared to fail – because failure simply means you tried.
Tune in to learn more about Nick and his cystic fibrosis story.

This video podcast was made possible through an unrestricted educational grant from Novartis to the Boomer Esiason Foundation.

Apply Now for Our LMK Scholarship! Due October 15th

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees. Spring 2019 applications due on October 15th, 2018. 

Nancy Wech, Lauren’s mother, established this scholarship in Lauren’s name and memory. In Nancy’s own words:

Lauren Melissa Kelly was an extraordinary woman. Laughing, gregarious, spontaneous, fun, talkative, driven, thoughtful, smart, kind and loving — all descriptive terms for Lauren, who lost her battle with CF late in her senior year at the University of Georgia. In 1992, Lauren was chosen as one of ten Senior Leaders at University of Georgia. She had distinguished herself as a member of the Golden Key Honor Society, Mortar Board, Phi Upsilon Omicron, Gamma Beta Phi, the Tate Society and Delta Gamma sorority.

Lauren felt the most significant opportunities of her college career included participation in the reconstruction and formation of organizations, which will serve the university in the future. She acted as one of the re-founding members of the Phi Kappa Literary Society and was significant in the metamorphosis of the Z Club into the William Tate Society. Her other activities included Greeks Advocating Mature Management of Alcohol (GAMMA) in which she served as Secretary and Special Events Chair. She was also a member of the Women’s Glee Club for more than two years.

In recognition of her academic performance, Lauren’s degree of Bachelor of Science in Family and Consumer Sciences was awarded posthumously. At the time of her death, Lauren was engaged to be married and living off campus in an apartment. She lived life to the fullest!

Walt Disney said, “Don’t cry because it’s over, smile because it happened. It’s not the days in life you remember, it’s the moments.” As Lauren’s mother stated, “I smile because she happened to me. Now, I want you to smile because she has happened to you.”

Please visit our website for application and full scholarship criteria and details. http://www.cfroundtable.com/community-outreach/united-states-adult-cystic-fibrosis-association-scholarship/

Send any questions to scholarships@usacfa.org.

Public Voting is Open for Thriving Student Awards

Earlier this year, 40 AbbVie CF Scholars were awarded $3,000 based on their academic excellence, creativity and community involvement/extracurricular activities.

The public is now invited to vote for students to help determine this year’s Thriving Undergraduate and Thriving Graduate Students.

Now in its 26th year, the AbbVie CF Scholarship program has awarded more than $3.2 million to deserving students living with CF.

There are two easy ways to vote*:
  • Visit www.AbbVieCFScholarship.com and follow the instructions
  • Text “VOTE[ID]” (i.e. VOTE1) to 31901 using the personalized ID code provided for each specific scholar

*Please note: Individuals can place only one vote for a Thriving Undergraduate and one vote for a Thriving Graduate Student either online or via text message.

AbbVie, a research-based global biopharmaceutical company, today announced its annual call for the public to vote for students living with cystic fibrosis (CF), an inherited chronic disease that affects the lungs and digestive system, as part of its 2018 Thriving Student Scholarship. Scholarships totaling $25,000 each – the Thriving Undergraduate Scholarship and the Thriving Graduate Scholarship – will be awarded to two deserving students.

From today through September 19 at 11:00 AM EDT, the public is encouraged to visit the AbbVie CF Scholarship website (www.AbbVieCFScholarship.com) to learn more about this year’s AbbVie CF Scholars and review their online profiles to cast a vote to help determine the 2018 Thriving Undergraduate and Thriving Graduate Students. The public can vote online or via text message by texting the student’s personalized ID code to “31901” during the two-week voting period.

“I have always dreamt of becoming a child psychologist, and thanks to the AbbVie CF Thriving Graduate Scholarship, I have been able to focus more on my studies and less on the stresses that come with paying for my education,” said Taylor MacLean, 2017 AbbVie CF Scholar and Thriving Graduate Student. “I want to let other students living with CF know that despite the challenges, achieving your goals is possible, and I’m grateful that the AbbVie CF Scholarship, along with my family and care team, has allowed me to do so. Being acknowledged for my work and determination has helped me realize my full potential.”

Earlier this year, AbbVie selected 40 undergraduate and graduate students living with CF to each receive a $3,000 AbbVie CF Scholarship for use during the 2018-2019 academic year based on their academic excellence, creativity and community involvement/extracurricular activities. These AbbVie CF Scholars now have the opportunity to earn the title of 2018 Thriving Undergraduate or Graduate Student along with an additional $22,000 in scholarship funding for use toward their dreams of higher education. The Thriving Undergraduate and Graduate Students will be determined based on a combination of their academic achievements, community involvement/extracurricular activities, essay and creative presentation scores, as well as the number of public votes cast.

“Students living with CF inspire us every day. They are true fighters who don’t let their diagnosis hold them back from making a difference – whether it’s in the classroom or in their community,” said John Duffey, vice president, U.S. Specialty, AbbVie. “AbbVie has been proud to show our commitment to students with CF and their families by carrying on the AbbVie CF Scholarship tradition for more than 25 years.”

During the voting period, the public can show their support for the AbbVie CF Scholars by tweeting the link below. AbbVie will announce the 2018 Thriving Undergraduate and Graduate Students in October.

Click to Tweet: Students living with #cysticfibrosis need your help! Cast your vote to help award two $25K scholarships and determine the 2018 AbbVie CF Scholarship Thriving Undergraduate and Graduate Students https://bit.ly/TnPPq1

About Cystic Fibrosis

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of those living with this condition.1 In patients with CF, a thick, sticky mucus is produced in certain organs throughout the body, most commonly the lungs and digestive system. The mucus build-up in the lungs can cause difficulty breathing and may lead to life-threatening lung infections. In the digestive system, the thick mucus may prevent proper food digestion, potentially leading to malabsorption and malnutrition.

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 over $3.2 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

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 and development-based 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 LinkedIn.

References

  1. Cystic Fibrosis Foundation. About Cystic Fibrosis. Diagnosis and Genetics. Available at:https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/. Accessed September 2018.

 

Machine learning to help cystic fibrosis decision-making

By James Hayes

New research claims to have demonstrated that machine learning techniques can predict with a 35% improvement in accuracy – in comparison to existing statistical methods – whether a cystic fibrosis patient should be referred for a lung transplant.

The research, led by Professor Mihaela van der Schaar of the Alan Turing Institute at the University of Oxford, has been generated through a partnership between The Alan Turing Institute and charity the Cystic Fibrosis Trust. Continue reading Machine learning to help cystic fibrosis decision-making

Join in BreatheCon 2018!!

Calling all adults with CF!

Join me at #BreatheCon 2018! Step back from your day-to-day routine and connect with other adults with #cysticfibrosis to discuss topics that are unique to #lifewithCF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.
https://cff.swoogo.com/BreatheCon2018

CF Foundation | BreatheCon 2018

Registration is open for BreatheCon! Step away from your day-to-day routine and connect with other adults living with cystic fibrosis to discuss topics that are unique to life with CF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.Register today: https://on.cff.org/BreatheCon2018

Posted by Cystic Fibrosis Foundation on Tuesday, August 28, 2018

Patient-reported outcomes: Time for a new approach?

By Janice Abbott

Patient-reported outcome (PRO) measurement (e.g. health-related quality of life questionnaires, symptom diaries) can provide a standardized, valid and reliable way of gaining the patients’ perspective on ‘how they are’ or the benefits and limitations of a specific intervention. The insights that patients have concerning their health are important given that aspects of patient-reported quality of life are independent predictors of survival in cystic fibrosis (CF) [1]. Regulatory authorities require the inclusion of PROs in clinical trials as an additional outcome parameter and PRO information is becoming important in labelling claims. It is noteworthy that the top 10 research questions, reached by global consensus of patient and healthcare providers, all require the inclusion of CF-specific PROs to achieve meaningful answers [2]. This represents a significant paradigm shift but capturing data that matters to patients, families and clinicians is challenging. Two of the persistent challenges in CF PRO measurement are a) the development and use of technologies to enable efficient administration, accurate scoring, and the correct interpretation of data and b) being able to accurately measure PROs (or parental proxy assessment) across the entire CF lifespan. These important issues are considered by two papers in this issue of the Journal of Cystic Fibrosis [34].

PRO measurement largely remains a research endeavour with little uptake in clinical practice. Administering, scoring and interpreting PROs in a busy clinic is difficult. It requires staff time and expertise and the results are not instantly accessible to steer a discussion with the patient or to aid clinical decision making. Paper-based data collection suffers from missing, unreadable data that is prone to scoring/mathematical error. The development of electronic PRO (ePRO) technologies is immensely important in clinical practice and for endpoint assessment in clinical trials. It is a cost-saving, patient-friendly approach to PRO assessment: data collection can occur in clinic, the patient’s home, workplace or school. Results can be added to a patient’s electronic medical file, alerts triggered by problematic scores and clinicians can track patient/parent-reported symptom/event data over time. Importantly, electronic data capture enhances the integrity and accuracy of the data, makes it logistically easier to collect repeated assessments (daily or at several points over a trial), and is preferred over paper-based data collection by the US Food and Drug Administration (FDA).

There is growing evidence that paper and electronic versions of PROs typically provide comparable data but this requires psychometric evaluation if transferring an original paper-based questionnaire to an electronic mode of administration. Solé and colleagues have demonstrated measurement equivalence with paper and electronic administrations of the Cystic Fibrosis Questionnaire-Revised (CFQ-R teen/adult version) [3]. The e-CFQ-R web version is linked to an online database that can be adapted for any electronic devise (smartphone, tablet, computer). Immediately the patient completes the questionnaire, results are sent to the healthcare team and the data are saved in a centralized, protected database. Real-time patient-reported data are available to the clinician as an adjunct to clinical data. Access to the English and Spanish versions are by independent web addresses provided in the paper. Ultimately, the integration of PRO data within electronic care records as developed by Peckham et al. [5], or in CF patient registries would enable efficient patient care and longitudinal research endeavours.

There is a lack of PROs that can be used as endpoints in early intervention studies in CF. Such instruments are time-consuming and painstakingly difficult to develop so the research of Edwards et al. reporting on the initial development of a CF-specific, parent-reported instrument for children 0–11 years is welcome [4]. The need for an effective way of data collection is also considered. The instrument takes the form of an electronic (web-based data capture), observational sign/symptom diary containing 17 respiratory and activity signs that parents report the presence or absence of. Results suggest that children aged 7 to 11 years are best reporting for themselves, therefore observational reporting by parents should focus on young children aged 0 to 6 years. Considerable evaluation has yet to determine the final instrument but the development of the scale follows FDA guidance enabling its acceptance as a clinical trial endpoint in infants and young children with CF.

Over the last twenty years we have learned a great deal about measuring patient-reported outcomes in CF, and there are many pitfalls when employing PROs in CF trials [6]. They are typically secondary endpoints and the trial is not powered on them, often making it difficult to draw valid inferences about treatments. However, there are trials that have collected patient-reported respiratory symptom data as the primary endpoint [78], employing the only CFQ-R subscale that has been approved by the FDA for use as an endpoint. Scientific, regulatory and pragmatic factors are driving the shift towards ePRO data collection. The development of ePROs is not trivial, yet they are fast becoming the ‘gold standard’ for PRO data capture in clinical trials. The challenge now is to develop CF-specific, lifespan PROs, utilising new technologies that can deliver real-time, high-quality PRO information. They also need to be acceptable to the regulatory bodies to aid their decisions on cost-effectiveness and ensure the appropriate commissioning of new medicines to improve the lives of people with CF and their families.

Original article with references here.

I Have Cystic Fibrosis, and CF Has Me

This Lung Life By Ella Balasa

I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say this statement is true. They conquer everything, despite CF.

I am not one of these patients. I am optimistic, though. I’m optimistic that one day I will sprint faster than you (with transplanted lungs). I’m optimistic that I will leave this world having made some kind of impact on those around me, and maybe others that I am unaware of. But with this DNA in the cells of my lungs, I can’t do it all.

I’ve had significant events and minute moments in my life that have been affected by CF, although it’s not always apparent to the world around me. However, I don’t claim that CF has altered my life for the worst. Instead, I show the reality.

CF had me most recently when I was planning to go to the Cystic Fibrosis Research Inc.’s Family Education Conference. Being a director for the U.S. Adult Cystic Fibrosis Association, I wanted to connect with fellow CF directors and hear about the amazing new research the CF community is eager to benefit from. Unfortunately, due to CF infection guidelines and the bacteria I harbor in my lungs, I posed a risk to other CF patients, so I was restricted from attending.

Recently, as my form of exercise, I have been playing tennis. CF has me when it grasps my airways after just a few serves. I feel my lungs expanding but not getting enough air, exhausted from a previous sprint of just a few feet. I watch as the ball spins toward the far corner of the court. In my mind, my legs are in the air moving toward it, but in reality, they have just elevated the sole of my foot for the first step. The muscles are depleted of oxygen, waiting for the next burst for them to spring into action, but it never comes. Instead, they continue straining with what little reserve they have, for one-quarter of their potential. The quarter that comes from the lungs that function at one-quarter of what they should.

CF dictated the direction my life would take when upon graduation I was offered my dream job, but I didn’t take that career path. Spending four hours a day on breathing treatments, attending frequent doctor’s appointments, having occasional hospital stays and health insurance factors, as well as maintaining a social life and community involvement weren’t conducive to a full-time working schedule. Choosing not to advance in my career as my peers did made me feel left behind. Instead, keeping my health as the focus, I chose part-time employment.

CF has me when I have an exacerbation and lots of congestion in my lungs. On occasion during these times, I’ve taken the flight of stairs from the basement out into the sunshine after work. After a few steps outside, I feel the absence of air in my lungs. I gasp and then panic. Continue the article here. 

Cystic Fibrosis Podcast 191 ‘Why do you run?’ with Ben James

In his latest podcast, Jerry Cahill sat down with Ben James, a 19-year-old college student who was diagnosed with cystic fibrosis at 4 years old. Originally from Chester, VA, Ben now attends Mount Vernon Nazarene University in Ohio where he studies pre-medicine. When he isn’t focusing on school subjects like anatomy and physiology, Ben likes to play basketball and soccer, and also likes to run long distance.
Ben loves the challenge of running long distance for a number of reasons, including building character, facing challenges as an individual, and learning discipline, which helps with his overall medical compliance.
Click here to listen:
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

The Year Ahead – Fall 2018 Scholarship Winner Guest Blog

By Roberto De La Noval

The next year is going to be a big one. I am writing against the clock to meet deadlines for my dissertation, sending out a book manuscript to a publisher, writing my first book review for an academic journal, presenting for the first time at a national conference…and all that on top of my first semester, in the Spring, of teaching undergraduates. Suffice it to say I’ll be busy. I wouldn’t have it any other way, though. Finally—at last—I feel like less of a perpetual student (I’ve been in higher education almost 12 years) and more like someone actually enjoying the first fruits of his career. That’s why I’m grateful to be one of the recipients of this year’s Lauren Melissa Kelley Scholarship; graduate school isn’t cheap, and so these funds will be of immediate help to me.

For example, I travel to one or two academic conferences a year, and often I cannot get the university to recompense me for all of the travel. That means that some of it comes out of pocket for me. The LMK scholarship will help me recoup these costs and make it more likely that I will pursue these opportunities to engage in the academic community and share my work. Another way the LMK scholarship will make a big difference is in allowing me to continue my language education. Now that I no longer am in coursework, the simplest way for me to continue improving my languages (German and ancient Greek are the ones I’m currently working on) is to have a private tutor who can work around my dissertation-writing schedule. These lessons are not cheap, but they significantly and rapidly help me improve my language skills, which in turn allows me to access more material for my scholarship and makes it possible for me to become a truly international academic who can engage with people from various parts of the world. It would be a welcome financial relief to know I have funds to continue my education now that I have finished formal coursework and am expected to be writing a book! In short, this is a critical period in my career of transition from student to scholar, and the LMK scholarship will facilitate this ctransition with greater ease.

In many ways the academic life is well tailored for someone negotiating the scheduled and regimented life cystic fibrosis demands. And I am happy to say that I’ve encountered nothing but support and encouragement from my faculty and colleagues when it comes to managing both my illness and my career. But it’s also a support in my work and life to know that so many others with CF are living their lives to the fullest, and that behind them there is a huge community of people who care about people with CF and work incredibly hard, often behind the scenes, to make a rich life possible for them. CFRoundtable and the LMK Scholarship are outposts of this amazing community of doctors, researchers, social workers, advocates, speakers, families, and friends. I relish the opportunity to be on the receiving end of their care, and I cannot wait to pay it forward in whatever way I can.