5 Inspirational Individuals with Cystic Fibrosis worth Following on Social Media

By Ella Balasa

I’ve created a list of young woman and men who make the most of life despite battling Cystic Fibrosis. They share their experiences, the good and the bad, on social media. They inspire, educate, and spread awareness about CF. As a person with CF myself, though I live a full life and experience similar obstacles and triumphs, I haven’t gotten the courage to show this kind of vulnerability. I hope they show both CF and non-CF people alike that we all can do many things we set our minds to despite having seemingly insurmountable obstacles in our way.

  1. Instagram: Fight2breathe

Caleigh is a 27-year-old woman who received a double lung transplant October 20, 2015. She shares posts about her daily struggles and triumphs in dealing with CF and transplant and now more recently dealing with the rejection of her lung transplant and her rapid health decline. She is incredibly knowledgeable about many procedures and tests her and her doctors discuss and she shares them with her followers in a way everyone can understand. Her genuine personality, charisma, and strength are all palpable through her words through which she relates her true fears, hopes, insecurities, and raw emotions about an unknown future. She finds something beautiful in every hard day, whether that be being able to see her pets, spending time with her loved ones, or just reading the uplifting comments on her posts.

  1. Instagram: lung_story_short

Rima shares her experience of fighting CF through humor and keeping lighthearted. Her sister shares her journey as being her caretaker while she waited for a transplant. She spent many days in the hospital exploring the hallways, playing games, crafting, and making friends with nurses. She has recently received a double lung transplant (5.14.17) and is now sharing her amazing recovery process day by day! Her lung function is increasing quickly and is gaining so much endurance and strength since being transplanted. She shares a lot about CF awareness and is becoming more known through the CF community.

“Hi my name is Rima and I have Cystic Fibrosis. I had come to the point in my health where my old lungs could no longer serve me and I was in need of a double lung transplant. Here I am now at 27 years old with brand new air baggies! It was a long journey but I am made it with the help of my trusty sidekick Laima, my sister. She joined me on my quest for new lungs when I decided to move to Colorado. The transplant center there decided that they didn’t want to do my transplant because they said that my post-transplant care would be tricky and risky due to how resistant the “bugs” in my lungs were to all antibiotics. So then the search for another center began. Thanks to my sister she discovered the U of M in Minneapolis MN with the help of a friend. Since that discovery, we are now part of the U of M family indefinitely. Throughout this whole thing, we decided we wanted to document and share everything Cystic Fibrosis related as well as transplant and organ donation. We started a blog last spring as well as started sharing on social media via Instagram, Facebook, and Twitter. We want to help spread awareness because there are so many people out there that are unaware of Cystic Fibrosis. There are also a huge amount of people that aren’t organ donors, many of them just don’t know how to become one but many just avoid the subject due to either personal or religious reasons. Another thing we want to show people with CF is that you can still have a fun-filled adventurous life, you don’t have to live your life cooped up in your house to keep good health. Laughter, sunshine and the outdoors soothes the body and soul! The Cystic Fibrosis community needs a cure, and with the help of spreading awareness, we can help raise funding for research! If you would like to keep up with our story you can follow us on Instagram: @lung_story_stort, Facebook: lung story short and for the blog atwww.lungstoryshort.com” -Rima

  1. Instagram: Tiffrich22

Tiff is a 28-year-old woman who was diagnosed at birth with cystic fibrosis. She resides in sunny California where she got a transplant November 30th, 2016 at Stanford University. A few years ago she started a campaign to meet her idol Taylor Swift at a concert. With the help of family, friends, and strangers, she got her wish. Her campaign led her to start her very own YouTube channel, LUNGS4TIFF, where she helps educate people and raise awareness about CF and the hardships while telling her story through videos. She intends to show others through social Media that having a positive spirit and desire for fun in life helps anyone get through the toughest times. She is thriving and planning for adventures to come.

“Through my Instagram, I have been able to show all of the sides of CF and transplant. I knew I wanted to be real and show the not so “glamorous” side of this disease, as well as the happy go lucky side. I feel by showing the hardships that I have faced, it has helped others know that it’s okay to struggle. I always say that there’s always someone going through much worse and that I’m lucky. Now with new Lungs, I am able to start my second chance at life and go check off my bucket list items. I have been able to check off my first NBA game (Go Warriors) and ride in a hot air balloon! I am blessed and can’t wait to post more about my adventures and my journey with new Lungs.

Another way I use Instagram to help the CF community and foundation is through mine and my best friend, Lea, @SaltyCysters page. We have joined forces to provide awareness and started making workout clothes to motivate the CF community to get their lungs moving and profits go to the CF Foundation to use for research and development towards a cure.

CF Awareness is very important to me. My passion is to help others and I think that by sharing my story via Instagram and all forms of social media, I am able to show that being positive is key to conquering this horrific disease. I will continue to raise awareness and share my story, hoping that CF will soon stand for Cure Found.” – Tiff

  1. Youtube: Staying Salty Youtube Channel

A group of 6 individuals talk, inform, help, and educate about their lives and experiences with CF. They come from all different backgrounds and live all over the country. They each post a video a different day of the week. They make videos on various topics related to living life with CF, including a day in the life, how they tell others about CF, surgeries they’ve had, medication organization, CF clinics and much more. Many videos are informative and interesting to view how others with CF are managing and succeeding in life! They have full-time jobs, they travel, they raise families, and importantly, they raise awareness for the CF community.

  1. Youtube: The Frey Life

A young couple, Mary and Peter, along with their pooch Oliver, share their day to day lives in daily vlogs on their YouTube channel. Mary has CF and they share the details of daily breathing treatments, doctor appointments, and the highs and lows of dealing with a chronic illness, both as a patient and a partner. Besides the aspect of Mary’s diagnosis, they share their strong faiths and their beautiful love story as a couple with their 100K subscribers.

Defining Barriers to Treatment for Patients With CF

The Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.

Continue reading Defining Barriers to Treatment for Patients With CF

Hill-Rom Introduces New Monarch Airway Clearance System

New Airway Clearance Technology Designed to Improve Patient Lifestyles through Mobile Wearable Therapy

Continue reading Hill-Rom Introduces New Monarch Airway Clearance System

Cystic Fibrosis Foundation to Give $3 Million for Novel CFTR Therapeutic

Arcturus Therapeutics, Inc. (“Arcturus” or the “Company”), a leading RNA medicines company, today announced that it has entered into a research agreement with Cystic Fibrosis Foundation Therapeutics Inc. (CFFT), the nonprofit drug discovery and development affiliate of the Cystic Fibrosis Foundation in which CFFT will pay up to $3 million to advance LUNAR-CF, a novel messenger RNA (mRNA) therapeutic formulated with Arcturus’ LUNAR™ delivery technology.

Continue reading Cystic Fibrosis Foundation to Give $3 Million for Novel CFTR Therapeutic

USACFA Scholarship Open for Applications!

USACFA Scholarship Opens Today, June 1st 2017-June30th for Fall 2017!

Please share with young adults who would be interested and qualified!

The United States Adult Cystic Fibrosis Association (USACFA) is excited to offer the Lauren Melissa Kelly Scholarship award for the Fall semester 2017. The scholarship will range from $1500 to $2500 and be awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees.

Criteria:

  • The individual must be a United States Citizen and over the age of 18 years old.
  • The individual must have a positive diagnosis of cystic fibrosis.
  • The individual must be pursuing a bachelor’s degree, associate’s degree, or certificate.
  • The individual should not be an immediate family member of someone on the USACFA board.

Requirements to include in the application:

  • The USACFA Scholarship application form (includes the 3 essays)
  • A copy of an official transcript from high school (and current college if you have completed coursework)
  • A copy of proof of enrollment for the Fall 2017 or Spring 2017 semester
  • A resume
  • A letter from the doctor/clinic on letterhead confirming cystic fibrosis diagnosis
  • A headshot

Deadlines:
ALL requirements must be sent in PDF or other appropriate digital format to scholarships@usacfa.org by Friday, June 30th, 2016 at 11:59 pm EST.

Application Form and Instructions

  1. Download our US Adult CF Association Scholarship Application 2017 form to your computer.
  2. Open and fill out the application form using your computer.
  3. Once the form is completed, please save the file.
  4. Make sure all other requirements (from above) are completed in an appropriate digital format and attach them to a single email sent to scholarships@usacfa.org.

 

New Drug to Help with Resistant Fungal Lung Infections

TGV-inhalonix, a New York drug development company behind ground-breaking Mul-1867 which gives hope to treating life-threatening, antibiotic-resistant bacterial lung infections in patients suffering from cystic fibrosis, announced that Mul-1867 has shown tremendous potential against clinical isolates of fungi from patients with cystic fibrosis and other severe lung infections. Continue reading New Drug to Help with Resistant Fungal Lung Infections

USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Please share with young adults who would be interested and qualified!

The United States Adult Cystic Fibrosis Association (USACFA) is excited to offer the Lauren Melissa Kelly Scholarship award for the Fall semester 2017. The scholarship will range from $1500 to $2500 and be awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees.

Continue reading USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

What Living on My Own Has Taught Me

By Ella Balasa

Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:

Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.

I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.

I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.

Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.

Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.

Green Smoothie Recipe – Healthy and Caloric!

By Ella Balasa

Rise and shine to start another day! Like most of us, I have limited time in my morning routine, AND I tend to slack on getting my greens for the day. Occasionally, I will eat a salad with my lunch or dinner, but that isn’t enough. The saying also goes… an apple a day keeps the doctor away…That’s definitely something we as CF patients want! Continue reading Green Smoothie Recipe – Healthy and Caloric!