YOU Help our Friends to #BreatheEasier

These are the MORNING medications for one of our members.(1)For a few years now we have adopted the hashtag #BreatheEasier to describe the work we do here at the Cystic Fibrosis Association of North Dakota. We aim to help people living with CF to breathe easier physically, financially and emotionally. This can be a daunting task, but it guides what we do.

Thanks to the generosity of our supporters (that is YOU!), we can do more than ever before to help our families living with cystic fibrosis.

We thought it would be good to take some time to let you know about the impact of your gifts. Your gifts help real people, living right here in North Dakota.

 

In order to receive benefits from CFA, a person must be born in North Dakota, live in North Dakota, have been diagnosed with CF in North Dakota or receive medical treatment in North Dakota.

Our benefits to CFA members are unique in that they are  direct aid, exactly where our members need them. One of the most significant ways that we help our friends to breathe easier is through our medication reimbursement program. You may have read about the outrage last year about the soaring price of epi pens for people living with life-threatening allergies. The cost of these pens went from about $100 each to over $600. Well, people living with CF can certainly relate to this. Individuals living with cystic fibrosis take upwards of 40 different dosages of medications a day. One of the most promising and effective medications costs $450 a DAY! Now, insurance picks up some of the cost of these medications, and often the drug companies offer a discount program as well. However, even after this assistance, there is still a pretty significant portion left for the individuals, our friends with CF, to pay. This is where CFA comes in. We help pay a portion of the costs of these medications that insurance does not. This helps our friends with CF to breathe easier physically—as they can continue to afford these life-changing medications, and financially. Thanks to YOU we can do this great work!

Recently we added a travel benefit to help our members get the very best care that they can. Our friends with CF live all across our great state, and many have to travel many miles several times a year for check-ups. (The current recommendation for someone with CF is to see their physician 4 times a year in order to maintain optimal health.) For young children, this means parents have to take time off of work to travel several hours to the nearest or best CF clinic. For adults living with CF, they too have to take time off of work to get the care they need. We help pay for gas milage to get to these physician visits in order to encourage regular care and to ease the financial burden of traveling long distances for specialized care. For those who have to travel more than 250 miles, we also offer a lodging benefit. This travel benefit helps our members to breathe easier physically, financially, and emotionally.

Your donations also help fund our generous college scholarships for people living with CF. The life expectancy for someone living with CF is now over 37 years old. With these added years, comes a need for a solid education. Our friends with CF are living full adult lives—and they themselves can change the world. We want them to have an even playing field and a chance to further their education. It is also important that the college student living with CF take good care of their health—which means keeping up with therapies and treatments. A young person with CF spends up to an hour morning and evening on breathing treatments—and during times of illness can spend much more time. We want to even the playing field and help our friends with CF pay for college so that they do not have to choose between a job to pay for college and taking care of their health. Thanks to you we have friends graduating from college and joining the work force every year. Because of YOUR generous donations, these college students can breathe easier!

Thanks to YOU we can make a real difference in the lives of people living with CF. If you would like to help more, visit CFANorthDakota.com and click on the donate button, or join us at one of our golf tournaments this summer. If you know someone who may benefit from our programs, please encourage them to visit CFANorthDakota.com and click on the join button in order to get more information about a CFA membership.

 

#GoMatchyMatchy, meet Pam!

14991344_10154643922012416_4443433946586554567_oHappy New Year! We are looking forward to a GREAT year for the Cystic Fibrosis Association of North Dakota. Every day we work towards helping our friends with CF to breathe easier—physically, financially and emotionally.

As a lead up to Giving Hearts Day 2017—an online, statewide giving day- On February 9, we are going to take the next month to help you get to know us a lot better!

Today we will introduce you to our Development Director, Pam Thompson, as she encourages you to #GoMatchyMatchy with her!

Q: How long have you worked for CFA?

I started at CFA a few months after my twin daughters turned three-years-old. Before starting at CFA I had been mostly a stay at home mom for the better part of 16 years! My twins turn 7 in just a few weeks, so that means I have been serving the cystic fibrosis community in North Dakota for nearly 4 years!

Q: What do you find the most challenging about working for CFA?

I think the hardest thing is to know that I am working to help people live with a disease that currently has no cure. There is great promise in treatment for CF, but it is really, really hard for me to see people suffer. I’m a problem solver by nature and I feel like I want to “fix” CF—which is no simple task. Everyone with CF works through things differently as well, so I try to meet people where they are at. CF also has a tremendous financial burden on families—so my challenge is to raise more and more funds so that we can do more good. It is a big job, and it is never truly finished

Q: When you tell your friends and family that you work for CFA, what do they say or ask?

The first thing people ask me when I tell them where I work is whether I know a friend or family member who has CF. I always respond that I only had a passing knowledge of CF before working here, but now some of my favorite people are living with CF. The Cystic Fibrosis Association really is like family, and the members that we serve are VERY dear to me.

Q:  What are 3 words you would use to describe CFA?

Family. Caring. Helping.

Q: Tell us about a moment you loved your job.

I always feel exhilarated at the end of a fundraising event such as Holiday Homes of Hope or the Turkey Trot or one of our golf tournaments. But the most rewarding moments are when I talk to the CF moms—they are the most special people and I watch them walk a difficult path. But when they thank me for the hard work that I put in—it means the world to me. Everything I do at work is for these families—and when that is noticed—it makes all of the long hours and crazy holiday times worth it!

Q: If a donor made a $30,000 donation and asked you to decide how the money would be used, what would you do?

Well, first I would cry. But then I would work on developing a CF-friendly lounge for people with CF to safely spend time together. CF can be extremely socially isolating—since individuals with CF can pass harmful bacteria back and forth. I dream of developing a space in which there was proper air ventilation and the like so that people with CF could spend time socially with each other – just like their non-CF counterparts. I’m not even sure if there is such a thing, but it is something I would LOVE to see happen!

Q: Who are you going to ask to #GoMatchyMatchy with you?

I want to encourage all of my mom friends to #GoMatchyMatchy with me! I know that all of us dread having to deal with illness in our home and we can relate to the fears and struggles of the CF moms. We all want to see healthy kids and family members!

Q: How are you going to match?

I always donate to CFA on Giving Hearts Day, but this year I am contributing matching funds ahead of Giving Hearts Day to be used as matching funds—it may not be a lot, but even little donations can add up!

Q: How can people who want to be involved join in?

I thought you would never ask! If you want to contribute matching funds—contact me at the CFA Office: 701.222.3998. OR, mark your calendars for Thursday. February 9, 2017, and then log in to impactgiveback.org and donate to CFA (and many other charities as well!). I also would ask you to spread the word! If CFA has touched your life in some way, please share this opportunity to help our friends to #BreatheEasier with others! Together we can make a HUGE difference in the life of someone with CF.

Q: What might someone be surprised to know about you?

Most people are shocked to know that I have six kids! My oldest is 20 and my youngest are those almost 7-year-old twins I talked about earlier! I don’t find six kids and a full-time career that surprising, but others do!

Q: What do you do when you are not working?

I’m a blogger, and a speaker, and I love teaching other people about social media. But my latest obsession is crochet! I have been playing with yarn for almost a year now and I am ADDICTED!

Q: What is the best book you ever read?

Well, the Bible, of course, but outside of that, it is a toss up! I’m an avid reader, so I read a lot of books! But, I’m currently reading the Little House on the Prairie books with my girls and for now, those are my favorite! They lead to so much discussion and they help me realize how very easy my life is now!

Q: Do you have a favorite quote?

My motto is, “Ora et Labora”, which is Latin for pray and work, which finds its origins in the Rule of St. Benedict.  My life is not always as contemplative as I would like, but this motto does serve as a guide and a reminder of what is important vocationally.

ghd_logo_ribbonTo learn more about CFA and our services, visit CFANorthDakota.com

Mark your calendar for Giving Hearts Day—February 9, 2017—at impactgiveback.org

Pam can be reached at development.cfa@midconetwork.com

 

 

 

 

 

 

 

 

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.ella-donation

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 know that she was going to give her very own money–$12.57 to be exact, to help others living with CF.ella

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!

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Take a Swing at Cystic Fibrosis

Press Release

For Immediate release:

23rd Annual Cystic Fibrosis Association Golf Tournament

Take a swing at cystic fibrosis.

Mandan, ND, June 3:  The 23rd Annual Cystic Fibrosis Golf Tournament will be held at Prairie West Golf Course in Mandan, ND on Friday, June 3. This scramble style tournament features a picnic lunch, hole-games, door prizes, a Hole-in-One Contest Sponsored by Kupper Chevrolet-Subaru, a margarita hole, silent auction, and dinner.

Registration is $85 per golfer or $340 per team which includes green fees, cart rental and meals.

Registration forms can be found at CFANorthDakota.comGolf Slider.

Proceeds will support local individuals suffering from cystic fibrosis, a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.

For more information contact:

Pam Thompson, Development Director

Cystic Fibrosis Association of North Dakota

701.222.3998 (office)

701.426.7657 (mobile)

development.cfa@midconetwork.com

About the Cystic Fibrosis Association of North Dakota:

The Cystic Fibrosis Association of North Dakota (CFA) devotes its time and financial resources to helping North Dakotans with cystic fibrosis (CF) and their families by:

  • Assisting with the costs of medications and medical equipment not covered by insurance
  • Providing funding for lung transplants
  • Coordinating support group meetings
  • Providing college scholarships so young people with cystic fibrosis can focus on studies, and not compromise their education because they need jobs to support their educational endeavors
  • Informing the public about cystic fibrosis and current research
  • Lobbying to protect individuals with CF and their families from undergoing undue hardship and ensuring their right to receive health care coverage.

The CFA is a statewide non-profit corporation. It is not affiliated with any national or international parent organization, nor does it receive any government assistance.

Giving Hearts Day is THIS Thursday! #GivingHearts16

The Cystic Fibrosis Association of North Dakota has been selected once again to participate in Giving Hearts Day on February 11, 2016. Giving Hearts Day is a 24-hour online fundraising event. Contributions of $10 or more will be matched by generous donors.

To support CFA and have your donation matched, simply go to impactgiveback.org on February 11, 2016!

Your generous donation will help our friends with CF to #BreatheEasier!

We would love you to meet just a few of these friends!

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