Take a Swing at Cystic Fibrosis

Posted 3/01/17 (Wed)

 

Take a Swing at Cystic Fibrosis

The sun is shining, the days are growing longer. This can mean only one thing! Golf season is near!

Two of our long-standing fundraisers are the golf tournaments that we host each summer.

We open the season with our Bismarck/Mandan tournament scheduled for June 2, at Prairie West Golf Course in Mandan.  We close out our season on August 4, with our Fargo/Moorhead tournament at The Meadows in Moorhead.

These two tournaments are one of the big ways that we help our friends with cystic fibrosis to breathe easier.

Here are some things that we are looking for:

  • Corporate and Individual Sponsors for teams and tee boxes.
  • Golfers of all skill levels who are ready to have fun
  • Donations of goods and services for our door prizes and raffles.

 

Flyer can be downloaded here

Registration form can be downloaded here

OR

Register online here

For more information, contact Pam at 701.222.3998 or development.cfa@midconetwork.com.

 

#GOMatchyMatchy, Meet Pam

Posted 1/03/17 (Tue)

 

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

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 fall, in both Bismarck and Fargo. I invite you to join in the fun, and help CFA at the same time! Registration is now open for the Sonia Balliet-Heidenreich Memorial 5K Run/Walk in Fargo on October 3. Registration is open for the Turkey Trot 5K/10K on Thanksgiving Day in Bismarck, and tickets will go on sale in October for the Holiday Homes of Hope Tour in the Rose Creek Neighborhood in Fargo, scheduled for November 14 and 15. 

  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!

Austin Huus, 2014/2015 Youth Ambassador

Posted 12/18/14 (Thu)

 

Austin Huus, 2014/2015 Youth Ambassador

Written by Austin's mother, Lisa.
 
Austin was born on January 6, 2009 with Meconium ileus and ended up in ICU before his discharge. It was there that we were told he possibly had CF, which we later learned was the case. He spent 18 days in ICU and we began our journey learning about cystic fibrosis and caring for someone who has it. Austin has two DeltaF508 genes and has both respiratory and digestive issues with his CF.  He takes a whole list of oral and nebulized medications throughout the day to maintain his CF, along with chest physiotherapy twice a day. Treatments have been forced to every four hours when respiratory illnesses take a hold on Austin. He has taken part in two clinical trials to help doctors find new treatments and medicines for those with CF.

 Austin was hospitalized five more times before he turned nine months old. He had several respiratory infections, included pneumonia, RSV, and Pseudomonas. Not only did this disease turn our lives upside down financially and emotionally, it also put us in a position where daycare was not an option anymore.  A job I had with Bobcat for 17 years suddenly turned into a memory. I quit and became a stay at home mom with a long list of daily chores to care for our new child. Austin was so sick during that first year that we spent a minimum of two days a week traveling to Fargo for doctor appointments. He now goes to the University of Minnesota Cystic Fibrosis Center in Minneapolis.

Austin has a brother, Jarrett who is 14, a sister, Makayla who is 12, and no family pets. One by one, as Austin continued to get sick, we were forced to get rid of our family dog and cats. Austin’s dad, Greg, has a very big family and we are very surprised that we have not found any of them with CF or even symptoms. We did learn that on my side, my dad’s second cousin had several children with CF and many of them died as children. Two are still living and have CF.

Austin has continued to struggle with respiratory illnesses and gaining weight throughout his life, which have resulted in many more hospitalizations. His weight issue just recently became too severe and in June was put on a feeding tube to help supplement his nutrition.  This was a difficult decision to make but it has proven to be the best thing for him. He has gained weight, became even more energetic (which I did not think was possible), and it has helped him transition into a thriving Kindergartener. He loves learning new things and spending time with his friends.

Austin is such a strong, determined, fun loving, happy, energetic boy with a love for life. He is usually the one that tells me everything will be OK. I remember one time when Austin was very sick with another respiratory infection and he was coughing quite a bit, tears started to roll down my cheeks and I told him I wish I could help him out. He looked at me with his blue eyes ( at that time….now hazel) and put his hand on my shoulder and told me, "It’s Ok mom, I know you and my doctors are doing the best you can, it is just the CF, I will be OK.” He was three then and I discovered that he is way stronger and braver then I could ever be. I often say that he is my angel and I consider myself lucky that God chose me to share his life with. He has totally accepted the fact he has Cystic Fibrosis and lives each day to the fullest. He can find a friend in a room full of strangers and brighten up someone’s day with his smile!