Juggling Responsibilities and Compliance – Guest blog by LMK Scholarship Winner

By: Mike Miccioli

I went to high school in Nashville, Tennessee and am currently a freshman at Harvard. Growing up in Nashville, I always focused on academics and staying healthy. On the academic side, I have always had an interest in mathematics, and physics is a fascinating way to apply math to science and the universe. I took all the toughest courses in math and science, and I competed in every math competition and Science Olympiad contest available. I did applied mathematics research at Vanderbilt University the summer after my junior year of high school, and different research during my senior year in condensed matter physics. On top of this hefty workload, my school required all its students to play sports after school year-round. With all of these obligations and many hours of homework each night after sports, working in my CF therapies was not easy; however, from an early age I learned the lesson that I had to prioritize my CF therapies that were necessary to keep me healthy and enable me to pursue my academics and sports. I had to be disciplined, and I got up early each day before school to make sure I did all my vests and nebulizers in the morning. There was a second round each evening, and I would always try to combine homework with both the morning and evening sessions. If a special circumstance would throw my schedule off and interfere with my therapies, I always made them up at different times during the same day; it was a given that I couldn’t miss therapies.

Compliance with the therapies that are available to us nowadays is crucial to having a good outcome with CF. There is generally a vast difference between the outcomes of patients who do their best to comply with their therapies every day and those who have a hard time completing theirs on a regular basis. I have always stayed aware of this fact and used it to motivate me to be compliant, and I believe it has paid off.

This fall I made the transition to my first semester in college, 1200 miles away from home and my support network. The first adjustment was being responsible for remembering to do everything without prompting from my parents. That wasn’t too difficult, and a bigger challenge was learning how to be more flexible in how I achieved my full compliance despite the fact that my schedule was different every day. Reflecting back on my years prior to college, my schedule was the same nearly every day, and this helped me stay disciplined in keeping up with my therapies. In college, I have had to look at each day and determine when I am going to fit in my routine as I meet all my academic obligations. Having completed my first semester, while it was frustrating at first, I eventually fell into a rhythm — from having nighttime labs one day to having an overloaded afternoon the next, eventually I encountered all the different scenarios I would be faced with, and it became easier to deal with each day’s changes.

I am continuing my studies of math and physics at Harvard and am currently in the process of applying for research opportunities for this summer. At this point, I am thinking that I want to pursue a career in scientific research. I guess one of the main reasons I feel this way is because I have personally benefited from modern advancements in medicine. I currently take one of the CFTR modulator drugs and have had good results with it, and it reminds me every day of how people can benefit from cutting edge research and have their lives changed in meaningful ways. I hope to be able to contribute back to the scientific community and perhaps some day make a difference for others.

This also relates back to the point I was making before about working hard to be as compliant as possible with your CF therapies. CF research has made amazing strides, and it appears that significantly improved CFTR modulators will be available to as many as 90% of those of us with CF sometime in 2019. The healthier we are when these new therapies become available, the better positioned we will be to take advantage of their benefits to the maximum degree possible. That is the other big reason to try and stay compliant. So, in conclusion, I want to encourage everyone to remember that while it is difficult to make compliance a priority day after day, without a break, particularly when you are in college with new vistas to explore and great demands for your time, it is worth it, and you will reap the benefits in the short run and even more so down the road when new therapies become available.

Two more weeks to apply 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.  Continue reading Two more weeks to apply for our LMK Scholarship! Due October 15th.

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.

 

Calling All Students! LMK Scholarship deadline June 30th!

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.

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.

Lauren Melissa Kelly Academic Scholarship Due June 30th

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.

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.

 

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/

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**

USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

By: Laura Mentch

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy. Continue reading USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

College and CF – Spring 2018 Scholarship Recipient Guest Blog

By: Holly Beasley

Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.

I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.

College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.

All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.

Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.

Apply for the chance of a $10,000 scholarship!

The Sacks for CF Scholarship is related to quarterback sacks made during the NFL season. The undergraduate and graduate award is made annually to 30 people who strive for therapy adherence and academic success.

Continue reading Apply for the chance of a $10,000 scholarship!