Posted 3/07/19 (Thu)
The movie Five Feet Apart, a film about two teens with Cystic Fibrosis (CF), starring Cole Sprouse and Haley Lu Richardson, will open in theaters nationwide on March 15.
A book based on the film was published in November. One of the main characters in the movie is waiting for a lung transplant; the other is on a clinical trial for a drug to treat a B. cepacia infection.
Both the movie and the book are causing concern in the CF communities, specifically revolving around the accuracy of the details surrounding CF. There are multiple themes in the movie including the 6-foot rule, cross infection, lung transplant, emotional wellness, and mortality.
One needs to remember that the movie and book are both fictional stories that have been sensationalized for the big screen in order to sell tickets. While there have been multiple documentaries about CF developed over the years, including; Take a Breath (currently in production), Living with CF, Three Lives and Sweat Test, (to name a few), there has only other movie to date, made for “entertainment purposes". The movie, Alex, the Life of a Child, aired only on TV back in 1986. The storyline was based on the true story of a young girl’s journey with CF. This is more than 30 years ago when the general public was only beginning to become familiar with cystic fibrosis and its devastating effects on the body.
I will go to this movie with a clear understanding that I am not going to a documentary. I am sure to find myself attached emotionally to the characters and their challenges.
However, it is my hope that the movie Five Feet Apart, while controversial because of its Hollywood glamorization, will be an opportunity to open the eyes of the general public about the day to day challenges one faces living with CF.
It is my hope that it will bring an overall all positive awareness to the greater community, that those living with CF or any debilitating disease, are not the disease, but should be viewed as people with the same life’s desires as anyone else.
It is my hope that viewers walk away with a feeling of connection and a new understanding of the lives of characters, even if for only a moment.
In the future, when those moviegoers hear of an event or activity that includes support for those with cystic fibrosis, perhaps that connection draws them to say yes, I will help others to #BreatheEasier.
Posted 10/03/16 (Mon)
A few weeks ago, at our Annual Run/Walk in memory of Sonia Balliet-Heidenreich, a sweet little 7 year old approached me, carrying an envelope.
This little girl, Ella, is the daughter of one of Sonia's best friends. Ella did not get to grow up knowing Sonia, who suffered from, and eventually died from cystic fibrosis--but her mother, Gena, has worked tirelessly to keep Sonia's memory alive.
Through the years since Sonia's death, Gena has raised thousands of dollars for the Cystic Fibrosis Association of North Dakota. These dollars have helped people living with CF to #BreatheEasier through direct financial support for medications, travel to and from medical appointments, college tuition assistance, and lung fund matching funds.
As the saying goes, little eyes have been following Gena, and her daughter, at the tender age of 7, wanted to help out too! She let her mom knwo that she was going to give her very own money--$12.57 to be exact, to help others living with CF.
Gena's example of generosity, and of supporting a charity that is in line with her passions has successfully been passed on to her daughter!
We applaud Ella for her sweet, generous spirit! We want her to know that the money she so selflessly gave will go towards helping little girls her age!
Thank you, Ella, for helping our friends with cystic fibrosis to #BreatheEasier!
Posted 8/19/15 (Wed)
I have good news for you, and then some bad news. The good news is that medications and treatments for CF are showing amazing promise! A child born with CF today has a predicted lifespan similar to their peers without CF. However, the bad news is that this treatment does not come without a price tag. Some of these medications can cost as much as (or more than) $300,000 a year!! The pharmaceutical companies have some assistance programs in place, and health insurance picks up even more of the cost, but our friends with CF are still left with staggering prescription costs. CFA is honored to step in and help, but this is where YOU come in!
Please raise your hand if you would like to help our friends with cystic fibrosis to breathe easier.
Helping our friends is simpler than ever! We have so many ways to help, and some can be done without even having to leave home!
Ready? Let’s dive in!
Do you love to shop? I know that I purchase at least one item from Amazon.com a week. Did you know that Amazon has partnered with nonprofits like ours? When you shop at AmazonSmile, Amazon donates 0.5% of the purchase price to Cystic Fibrosis Association Of North Dakota. Bookmark the link and support us every time you shop. Every quarter we receive payment from Amazon and it adds up quickly!
Like jewelry? Bravelets.com has a wide selection of inspirational jewlery. The best part is that $10 of every item is donated to charity. Shop using this link and CFA will receive this donation! It is a win-win, really. You know that our friends with CF are so brave, and we receive funding to help them continue to fight!
Become a CFA Champion! We are looking for a group of dedicated champions, who commit to giving $10 or more on a monthly basis to help offset prescription medication costs for our friends with CF. The donation process is easy, and if you sign up for an account, you can easily track your giving over time, and you can pause or suspend your monthly commitment easily. Will you be a Champion for CFA? Click here to get started.
Have fun while helping CFA: We have several events coming up this year, in both Bismarck and Fargo. I invite you to join in the fun, and help CFA at the same time! Mark your calendars for Giving Hearts Day on February 8! this is your chance to say #countme and help North Dakota become the most generous region on the planet! Plan on dusting off your golf clubs this summer--June 1 at Prairie West in Mandan and August 3 at The Meadows in Moorhead!
Volunteer: We have a variety of volunteer opportunities available. Join our volunteer database and I will be sure to contact you and get you involved exactly where we need you!
The future is bright for our friends with cystic fibrosis, and YOU are making it brighter every day! Thank you!!
Posted 1/28/15 (Wed)
Thank you for helping our friends with CF to #BreatheEasier!
Posted 1/13/15 (Tue)
Ashlee looks like any other college student; blonde haired and bubbly, this nursing student appears to be the picture of health.
The truth is, Ashlee has to work just as hard to stay healthy as she does to keep her grades up. Ashlee has cystic fibrosis, a life-threatening genetic disease that causes a thick, sticky mucous that clogs the lungs and blocks enzymes from being released from the pancreas. CF is often thought of as just a lung disease, but the more we find out about this condition we know that it affects nearly every body system.
Ashlee describes her journey with CF as a "constant strive to persevere". She goes into the hospital for a tune-up about three times a year; usually in August before school starts, over Christmas break, and over Spring break. While her classmates are taking road trips to Florida, Ashlee is in the hospital making sure she will be healthy enough to finish out her semester.
While Ashlee stays pretty healthy in spite of her CF, she has had some setbacks that keep her and her family on their toes. Things like bowel obstructions and bleeding lungs have been some hurdles that Ashlee has had to jump.
Ashlee is a fighter, and a strong young lady, and she really believes that cystic fibrosis has helped build her character:
"I constantly remind myself that things can always be worse and I see my CF as a blessing. It has shaped me into the person I am today, and I wouldn't have the same "fighter" inside me as I do now. I have always been told to follow my dreams and never let anything stop me. I am currently in nursing school, which is an accomplishment in itself. Many people said I couldn't do it and look at me now!"
Ashlee has added working out to her daily schedule, in order to keep her body and lungs strong to fight this disease. She has had some positive results from visiting the salt cave here in Bismarck. Ashlee has been participating in the Turkey Trot for about seven years now, and is consistently one of our largest pledge-raisers! She has a fabulous family network to support her.
Ashlee benefits from her membership in the Cystic Fibrosis Association of North Dakota. She receives assistance in paying for her medications and other therapeutic equipment. Ashlee also receives a college scholarship to help pay for her nursing school. She does not have time or energy to work her way through school after factoring in therapy and studying time--CFA helps her to #BreatheEasier by making her college education a little less burdensome.
When you donate to the Cystic Fibrosis Association of North Dakota, you help people like Ashlee #BreatheEasier, not only physically, but financially and emotionally as well!