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.

Congratulations to Our Scholarship Winners!

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship for the Spring of 2019.

In our evaluation, we look for students who demonstrate tremendous academic achievement, community involvement and a powerful understanding of how having CF matched with these achievements places them in a unique situation to gain leadership roles within the community. Our scholarship is open to all pursuing any degree, from associates to Ph.Ds. We believe that any higher education is a strong foundation for advocacy and involvement in CF.

We are pleased to announce Rebecca Cedillo and Michael Miccioli as the recipients of this semesters’ scholarship. Congratulations to them! They will be awarded $2500 each.

Both of our recipients demonstrated the leadership, intelligence, and drive of Lauren Melissa Kelly. We at USACFA look forward to seeing them further develop their leadership and advocacy in the cystic fibrosis community.

We are excited to announce more scholarship opportunities coming soon! Please stay tuned for more information. For questions, please contact us at scholarships@usacfa.org.

We Thank You!!

We sincerely thank each and every one of you who donated to CF Roundtable yesterday on Giving Tuesday.

Your contributions are immeasurable! Your support of our organization means the support of many many individuals with CF to help join us as a community and to help spread awareness and resources.

Thank you!

Happy Holidays!

Giving Tuesday is tomorrow!

Dear CF Roundtable Subscriber,

Please consider donating to CF Roundtable tomorrow on Giving Tuesday, November 27th, a national day of giving.

For double the impact, The McComb Foundation will match your donation!!

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information and resources through CF Roundtable.

As one reader shared, “I believe my mental and physical health is in a better place than it would be without CF Roundtable. From the importance of exercise, to tips on traveling, to summaries of medical journal articles (some of which not even my doctor was aware of!) – all have had a positive influence on my life. But perhaps the most impactful aspect has been lessening feelings of isolation of living with such a cruel, isolating disease. Thank you!”

Because of you:

  • All of our readers receive the CF Roundtable newsletter at no cost.
  • Our publication & website have the latest research, legal and critical knowledge that has helped to maximize medical care.
  • CF Roundtable gives scholarships to students with CF who are striving for higher education.
  • Our Speakers Bureau presenters (who are all adults with CF) speak at your CF events and spread education and support about CF.
  • We can continue all of this and more!

CF Roundtable is run by a board of adults with CF from our editors to our directors. Our time is 100% voluntary. Together, we create the CF Roundtable publication, website, and numerous programs. We do this for you and our vital CF community.

We hope to count on your support this year. Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com or click here and donate!

Happy Thanksgiving!

Dear CF Roundtable Readers,

We wish you all a wonderful Thanksgiving holiday!

At CF Roundtable, we are thankful for our readers and subscribers. Thank you for making Cf Roundtable a part of your life and may you have a holiday filled with happiness and the joys of life!

Tis the season of giving and with the holidays upon us, please consider donating to CF Roundtable on Giving Tuesday, November 27th, a national day of giving.

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information, and resources through CF Roundtable.

Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com and donate!

Third Annual CF Roundtable Gratitude Dinner

On October 17th, during the NACFC conference in Denver, CO, CF Roundtable (USACFA) hosted a dinner event honoring 68 social workers and other CF Care team members.

It was hosted by our very own Beth Sufian, JD and an informative presentation was given by Isabel Stenzel Byrnes.

The evening ended with a Gratitude Ceremony recognizing the importance of the CF team members to the health and well being of people with CF. Many attendees said the evening was the highlight of their attendance at NACFC.

Halloween themed goodie bags were handed out to each attendee, which contained a tote bag, with a lung design created by our talented director, Ella Balasa.

A big thanks to everyone who attended!

We have a limited number of totes remaining. This #givingtuesday be one of our first donors and you can recieve one of our very limited edition totes when you donate $100 or more to CF Roundtable! First come, first served basis!

 

Please support us through AmazonSmile

This is the season of giving! The holidays are approaching and we know our supporters are busy shopping for gifts, decorations, and more for family and friends.

Did you know that your purchases can make a difference?

When you purchase on Amazon Smile, specifically smile.amazon.com/ch/93-1036770, they donate to United States Adult Cystic Fibrosis Association (CF Roundtable) when you do your holiday shopping!

AmazonSmile is a website operated by Amazon that lets you enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when you shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the purchase price to the eligible charitable organization of your choice.

Please support us through this simple and automatic way every time you shop, at no cost to you. United States Adult Cystic Fibrosis Association (CF Roundtable) sincerely thanks you!

Happy Holidays!

USACFA NAMED “2018 TOP-RATED NONPROFIT” by GreatNonprofits

The 2018 GreatNonprofits Top-Rated Award Winners list is published!

Award based on Outstanding Online Reviews

USACFA, publishers of CF Roundtable, has been named a “2018 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits.

The Top-Rated Nonprofit Award is based on the rating and number of reviews that USACFA received from volunteers, donors and aid recipients.

Making the GreatNonprofits Top-Rated List helps USACFA get visibility, trust, and recognition. It is promoted to donors on the GreatNonprofits website.

As donors look for nonprofits to give to in this season of giving, you can also share the good news about USACFA, publishers of CF Roundtable being a 2018 Top-Rated Nonprofit!

To see USACFA, publishers of CF Roundtable’s new Top-Rated Nonprofit badge Click here.

We thank you all!

Giving Tuesday 2018

Hello CF Roundtable Subscriber,

With the holidays upon us, please consider donating to CF Roundtable on Giving Tuesday, November 27th, a national day of giving.

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information, and resources through CF Roundtable.

Because of you:

  • All of our readers receive CF Roundtable free and have access to the latest research, legal and critical knowledge that has maximized their medical care.
  • CF Roundtable can support scholarships for students with CF striving for higher education.
  • Our Speakers Bureau presenters (who are all adults with CF) can speak at your next CF event and spread education and support about CF to other adults with CF, health care personnel, family and/or friends.
  • We can continue all of this and more!

CF Roundtable is run by an amazing board of directors who are all adults with CF. Our time is 100% voluntary. Together, we create the CF Roundtable publication, website and numerous programs for you and our vital CF community.

We hope to count on your support this year. Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com and donate!

Contact us at cfroundtable@usacfa.org anytime.

Thank you for being a subscriber and Happy Holidays!

Take Our Survey. We’d love to hear from you!

Please consider taking our 5-10 minute survey so we can ensure that the CF Roundtable is the best it can be!
We value our readers’ feedback and would love to hear from you.