What Would You Do For a Miracle?

Posted 1/17/18 (Wed)

 

What Would You Do For a Miracle?

CFA member Karen has experienced a miracle.

One of the major effects of cystic fibrosis is that the genetic mutation that causes the disease is a defect that changes the way water moves around cell membranes. Karen has thick, sticky mucus in her lungs which leads to chronic infections like pneumonia. It also leads to chronic sinus infections for Karen. For the past 30 years or so, Karen has spent untold time in the hospital and on IV antibiotic treatment.

Frequent hospitalizations put a real kink in Karen’s personal, professional and family life.

27 months ago, she began taking a newly released drug, called Orkambi. Orkambi does not treat the symptoms of CF, it treats the actual genetic defect, which directly changes the way she experiences CF.

Since Karen began taking Orkambi, she has only been hospitalized ONCE! Karen is reclaiming nearly two months of every year that was previously spent fighting infections. As a bonus, the arthritis symptoms that she was developing due to the chronic infections are finally reacting to treatment. Can you say miracle??

But, this miracle comes at a cost. Life changing medications are rarely cheap, and Orkambi is no exception. Last year, the sticker cost of Orkambi for January alone was $23,967.70. Karen has very, very good insurance, so her January share after insurance paid was $2,950.00 Her out of pocket expense every month for the rest of the year was $1,250.00.

Karen just received her first box of Orkambi for this year. The price went up and it is now over $25,000 a month, and her January share is $3,050! Can you imagine coming up with that kind of money for medications right after the holidays?

That is where the Cystic Fibrosis Association of North Dakota comes in. Thanks to generous friends like you, we are able to pick up the costs that insurance does not cover. Because of YOU, Karen, and many others like her, can #BreatheEasier. Because of YOU, we can make a real, lasting difference in the lives of people living with cystic fibrosis.

Thanks to you, Karen has reclaimed her life.  She was able to help move her daughter to St. Paul and back. She is able to attend her Aunt and Uncle’s 65th-anniversary party. She was able to attend a full summer of soccer games.

Karen calls all of this a miracle, and it is.  Karen spends countless hours volunteering at CFA events and promoting the good work that you help us to do, because, as Karen says, “What would YOU do for a miracle?”.

You too can be part of Karen’s miracle!

We are asking you and your friends and co-workers and family and neighbors to stand up and say #countme on Giving Hearts Day, February 8, 2018. Simply go to www.givingheartsday.com to sign up for a reminder. On February 8, all donations of $10 or more will be matched, dollar for dollar up to the first $4,000 donated. On Giving Hearts Day, you have the chance to participate in a miracle, will you stand and say #countme?

 

 

Giving Hearts Day is February 8!

Posted 1/03/18 (Wed)

 

Giving Hearts Day is February 8!

February 8, 2018, marks the day of Giving Hearts Day--the annual online giving day hosted by Dakota Medical Foundation.

 

Giving Hearts Day has become a major source of funding for the Cystic Fibrosis Association of North Dakota. Thanks to generous donors like you, we are able to help pay for medications, travel expenses for doctor visits and college scholarships for families living with cystic fibrosis, right here in North Dakota.

 

If you have donated on previous Giving Hearts Day, thank you! We humbly ask that you once again remember Cystic Fibrosis Association on February 8.
 

If you are new to Giving Hearts Day, read on:

 

Giving Hearts Day is a one-day giving event. It is hosted by Dakota Medical Foundation and can be found at givingheartsday.com. The process is simple! You simply decide that you want to be one of the thousands of North Dakotans that says #countme and donate to the charities of your choice on February 8. You log on to givingheartsday.com, select your charity, and donate!

 

The first $4000 donated to CFA on February 8 will be matched by generous donors. It is likely that your employer will match donations as well--ask your HR department--many local businesses are getting on board!

 

If you are not comfortable with online giving, you can mail a check to Cystic Fibrosis Association of ND. Simply make sure that the check is dated February 8, 2018, and it will be counted toward our grand total!

 

Throughout the course of the next month, we will be highlighting some of the individuals and families touched by CFA. To begin, we will introduce you to Ashlee, our 2017/18 youth ambassador.

 

Ashlee was diagnosed with CF at birth and is a stunning example of what can be accomplished with hard work and determination. In spite of numerous hospitalizations and so much daily time devoted to medications and therapy, Ashlee was able to graduate from the NDSU School of Nursing and is working as a nurse--her life dream!

 

Ashlee is a perfect example of the fact that while Ashlee may have CF, CF certainly does not define her!

 

Read here to read a past article about Ashlee.

Kids Helping Kids

Posted 10/03/16 (Mon)

 

Kids Helping Kids

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!

5 Ways to Help

Posted 8/19/15 (Wed)

 

5 Ways to Help

 

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!

 

Five easy ways to help our friends to #BreatheEasier

 

  1. 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!

  2. 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!

  3. 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.

  4. 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!

  5. 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!!

Giving Hearts Day Video

Posted 1/28/15 (Wed)

 

Giving Hearts Day Video

Thank you for helping our friends with CF to #BreatheEasier!

 

CFA Spotlight: Ashlee

Posted 1/13/15 (Tue)

 

CFA Spotlight: Ashlee

CFA Spotlight: Ashlee

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's team

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!