cystic_fibrosis_association

The Changing Face of Cystic Fibrosis

pthompson@cfand.org (Pamela Thompson) — Wed, 25 Sep 2024 14:01:23 GMT

Refelctions on the latest Cystic Fibrosis Foundation Registry data

So much has changed in the world of Cystic Fibrosis since I took on the role of Development Director at the Cystic Fibrosis Association of North Dakota in 2013. Some of these changes snuck up on me– babies growing into teenagers, children into adults, marriages, parenthood, and sadly, losses.

However, a closer look at the numbers from the Cystic Fibrosis Association Patient Registry for 2023 (the most recent registry release), I see that the changes are far more dramatic than what I observe in our office.

It is inescapable–there is a change (mostly positive) in the CF landscape!

The CFF Patient Registry tracked 33,288 individuals living with CF in the US. These individuals racked up 100,648 clinic visits, 12,569 telehealth visits, and 10,164 hospitalizations. As a bit of a data wonk, these numbers are quite telling. One that stands out is the hospitalizations– of those with CF, only about a third need to be hospitalized in a year! When I first joined the team at CFA in 2013 it was not uncommon for nearly ALL of our adults (and many of the children) with CF to spend a week or more per year in the hospital for a tune-up.

As you can imagine, these hospitalizations were expensive, time consuming, and disruptive in the lives of our members.

The rate of pulmonary exacerbation needing to be treated by IV antibiotics is down by well over 50% since 2019. A pulmonary exacerbation is when lung symptoms worsen are quite common in people with CF. Two factors leading to this improvement include the increased infection prevention and control related to the pandemic, and the widespread use of Trikafta.

Our CF population is aging–and what great news this is!! In 2003 the number of people with CF aged 18 and older in the US was 8,518, in 2023 that number has jumped to 20,107!

In 20 years the number of pregnancies has jumped from 162 a year to 675 a year! And, likewise, the annual mortality rate dipped to 7.0 per 1,000 people from 16.6.

There has been a dramatic decrease for the need for lung transplants with 242 nationwide in 2013 down to 61 nationwide in 2023.

65% of adults with CF have full-time or part time jobs, and 41% of adults with CF have college degrees.

There is some hard news as well–our friends with CF do suffer from depression( 26% of patients age 12 and over) and anxiety (28% of people age 12 and over). There is still much work to do.

The biggest, and most promising news is the changing survival outlook. Among people with CF born between 2019 and 2-23, half are predicted to live to 61+ years. One of the CF dads reported to me at our golf tournament last month that his daughter learned at her last appointment that the predicted life expectancy of someone taking Trikafta is 82.5 years–this is amazing!!

What does this mean for us as an organization, and you as a supporter? Your help is making a difference! YOU are changing lives.

Your support is helping three young people attend college this fall (and we have the capacity to help more!).

Your support makes it easier for our friends with CF to afford these life changing and life extending medications!

Your support makes travel to CF care centers easier and more affordable.

Your support is changing and extending lives! Thank you!

Meet Gigi: A Cystic Fibrosis Warrior

pthompson@cfand.org (Pamela Thompson) — Thu, 28 Mar 2024 13:47:37 GMT

A little bit of sass and a whole lot of energy!

Gigi's journey as a preschooler living with cystic fibrosis (CF) is one filled with love, support, and proactive care from her family and medical team.

At three years old, Gigi is a bundle of joy, full of energy and curiosity. Starting preschool in January was a big milestone for her, and her favorite part of the day is riding the bus to school, where she gets to experience new adventures and make friends.

Gigi adores her big sister and looks up to her in every way. She mimics her sister's actions and enjoys their time together, forming a strong bond that fills her days with laughter and companionship.

Like many young children, Gigi delights in imaginative play, particularly with her collection of baby dolls. She loves dressing up, often donning princess dresses that transport her to magical realms where anything is possible.

Gigi's journey with cystic fibrosis began even before she was born. When her older sister was born and diagnosed as a carrier, her parents took proactive steps to understand their genetic risks. Through testing, they discovered that both of them carried the f508del mutation associated with CF. This knowledge guided their decisions, including opting for prenatal testing during Gigi's pregnancy, leading to an early diagnosis.

Receiving Gigi's CF diagnosis was undoubtedly a moment of adjustment for her family. However, guided by their proactive nature and the support of healthcare professionals like Nurse Carla at Sanford CF clinic, they embraced the journey with resilience and determination.

Gigi's early months were marked by challenges, including hospitalizations due to Failure to Thrive, a common issue for children with CF. At just two months old, she required a feeding tube for support, which proved crucial for her growth and development. Despite the initial hurdles, Gigi's resilience shone through, and she pulled out her feeding tube days before her first birthday, signaling her strength and determination even at such a young age.

Though Gigi faces occasional health setbacks, such as minor colds, her overall well-being is a testament to the proactive care and unwavering love of her family and medical team. With each passing day, Gigi continues to inspire those around her with her infectious spirit and boundless courage, reminding everyone that with love and support, anything is possible.

Running For My Life--Sophie's Story

Mon, 05 Feb 2024 16:51:03 GMT

From Failure to Thrive to Half-Marathon Finisher!

“Failure to Thrive" were the words written on my medical document as the reason to receive

diagnostic testing for Cystic Fibrosis.

I was one year old at the time and could not imagine the rollercoaster this disease would take

me on throughout the trajectory of my life. The mindset of my CF Team, family, and eventually

myself once I was able to fully comprehend the severity of the illness was to simply prevent

progression.

With the best efforts possible, I was able to confront cystic fibrosis head-on and gain strength

and hope from the baby victories. With every hospitalization, exacerbation, and infection, I made

a point to remain optimistic and grateful for the health I had.

In 2019, I was fortunate to start a genetically modifying drug called Trikafta. For the first time in

my life, I saw a positive trajectory in my health. My cough disappeared, my hospitalizations

decreased, and my energy skyrocketed. I never knew what being healthy felt like until this point.

There were moments in my illness when I promised myself that if the opportunity ever arose to

take my life back, I would not hesitate to act. With this newfound feeling of health, I threw myself

into my body’s abilities and took up a new hobby: running.

I started slowly, knowing the scarring in my lungs would prevent any immediate success.

Gradually, breathing became easier and my distance lengthened. I found inspiration in my

father who completed the Abbott Six World Marathon Majors in my honor, and signed up for my

first half marathon.

I was able to train and complete the LifeTime Chicago Half Marathon in September with my dad

by my side, beating my goal time in the process.

I was able to surpass the limitations that used to hinder me and discover the joy of taking my

life back. By refusing to let my cystic fibrosis diagnosis impede me, I have made an entirely new

definition of “running for my life” and can happily say I no longer meet the requirements of

“Failure to Thrive”.

Meet Jordan: Cystic Fibrosis Association Youth Ambassador

pthompson@cfand.org (Pamela Thompson) — Wed, 13 Sep 2023 17:04:32 GMT

Jordan has a Hope-Filled Future!

We want to introduce you to Jordan Peterson, our 2023/24 Youth Ambassador.

Jordan grew up in Fargo, the oldest son of Dan and Anette Peterson. Jordan was born with cystic fibrosis and underwent a double lung transplant at age 10.

From Jordan:

“I was diagnosed with CF right after I was born with the sweat test, my parents were aware that I would have something when my mom was pregnant with me, they just didn’t know what it was till after I was born. I can’t say if the newborn screening made a difference to me but I’m sure it did for my parents because they were able to prepare for raising me.

CF has always affected my day-to-day life more before my transplant than after. I remember growing up and not always being able to keep up with the other kids during various sports activities because of my CF. I think the thing I hated the most growing up was when I would have to come in from playing outside to do one of my 2-3 vest treatments a day which took 45 minutes each time.

Now that I’m post-transplant there is not anything I can’t do that other 21 years olds can. In high school I was able to play any sport I wanted, including football, and as far as we know I am the first double lung transplant recipient to play varsity high school football. So, living post-transplant has been completely different and I often get told “I would never have guessed you have cystic fibrosis or a transplant”.

CFA has been a massive part of my journey helping pay for many appointment visits and now paying for a large part of college. I am incredibly grateful for CFA because of all they have done for me and my family. I don’t have to worry about my college tuition because of CFA and I’m incredibly grateful.

Right now, I am attending NDSU and studying for a degree in finance. My hopes for my future after college hopefully do some traveling around the world and one day to become a business owner. “

Here at the Cystic Fibrosis Association, we could not be prouder of Jordan! We have been rooting for him for many years and we look forward to his hope-filled future!

Meet Emily: Cystic Fibrosis Mom

pthompson@cfand.org (Pamela Thompson) — Wed, 19 Apr 2023 16:05:53 GMT

The Journey of a CF Parent Has Ups and Downs

As told by Emily .

Our story with cystic fibrosis all started when I went into pre term labor at 32 weeks pregnant and found out our daughter had a bowel obstruction. I was only 18 at the time and was terrified. This was also my first child so I was so clueless.

We were being flown down to Sanford in Fargo for her to be able to have surgery after she was born. I remember the day she was born. It was November 3rd all of these people were in the room with us it was not a typical delivery where there are maybe a few people in the room– this was like a whole army of people.

When she was born, she was taken to the NICU and the next day was to have surgery. I remember being asked if we had cystic fibrosis in our family at all and I had no clue what this was had never even heard of it. At this time, CF was just suspected, but once the newborn test came back, it was certain.

I remember being pulled into a room to talk to the doctor and I knew something was up. The doctor told me the news that my daughter had cystic fibrosis. Of course I was an emotional mess and so scared specially being alone getting this news, and knowing nothing about it.

This is when I started to make myself more knowledgeable and able to tell my family.

We named our little girl Annabella Rose King. She did great after surgery and did get a temporary colostomy bag until she was ready to have the second surgery of putting the bowel back together.

The NICU was a scary place but also a wonderful place because all the nurses and doctors were amazing and made us feel like family. There will always be certain nurses/doctors I will remember for the rest of my life.

After Annabella’s first surgery she spent time just growing and getting stronger and ready for her second surgery where they were going to put the bowel back together and she also received a g tube.

She did well with her second surgery for a while and even eventually got to go home for two weeks. This is when things started to go downhill.

Annabella ended up with another bowel obstruction so we had to go back to Fargo where she stayed until she was ready to have surgery again. She eventually did have surgery where she got a colostomy bag again but something was different this time with surgery. This time she never came back the same and never got off the breathing tube except for a couple of days.

Annabella had many more procedures done and more surgeries. She wasn't doing the best but she was such a fighter. This was a scary time in my life as I was alone a lot of the time as her father still had to work and provide for us. My mind honestly makes me forget a lot of this as a coping mechanism so it’s hard to fully tell my story in full detail.

Eventually Fargo sent us down to University of Minnesota in Minneapolis where we spent a few days and they told us that our daughter was dying. She needed a liver and small bowel transplant and was not a candidate because of the state she was in. They also found out she had a few strokes and some brain bleeds. At this point our world was turned upside down and we wanted to go back to Fargo where she had been the last 6 months and where they were like family to us.

In Fargo we had to make a decision no parent should ever have to. We had to decide to let our sweet girl go home to God and no longer suffer or to keep trying. At this point we knew it was not fair to keep making her suffer.

Fargo helped us through this difficult time and made it peaceful for all of us we took her breathing tube out on Mother’s Day where she spent all day with us passing away after midnight. She passed on May 9th.

Throughout her 6 months of life, she was the most smiley little girl ever–always had a smile but she was also a little spit fire. She touched so many lives and will forever be remembered . It’s very fitting that her middle name was Rose and she passed in may during Cystic Fibrosis Awareness Month.

Now, let’s fast forward to life now. I have a son, and another daughter who also has cystic fibrosis. Her situation is completely different than my first-born Annabella’s situation.

Adalynn, my second daughter with cystic fibrosis, is doing SO amazing and is healthy as can be.

I remember getting the news that she had cystic fibrosis and my world once again was crushed. I was so scared and worried because of how things went with my first born.

Everything was completely different this time though. She was born healthy and has stayed healthy besides catching a few bugs. Things are advancing so much with cystic fibrosis in such a good way.

I am hopeful hat one day cystic fibrosis will have a cure and that one day my daughter won’t have to take all these medications and treatments.

When Adalynn was born this is when I found out about the CFA of North Dakota and they have been amazing to us. They lift so much stress off of me. I know that if we ever need help getting anything for Adalynn such as but definitely not limited to medicine or medical equipment, they will be there for us and that settles my mind tremendously.

They also help us travel to be able to get Adalynn to her cystic fibrosis team. Without the CFA I would have so much more stress and worry. It is amazing to know that we have help and support behind us.

I never in my life thought I would have children with a genetic disease. It has changed my life completely. I now have to worry about medications, treatments, keeping her safe and healthy from certain things, health insurance, and many other things.

I would not change it for the world though it has been amazing to be a part of the cystic fibrosis community!

Meet Daviney: 2022/23 CFA Ambassador

pthompson@cfand.org (Pamela Thompson) — Wed, 24 Aug 2022 17:24:12 GMT

Daviney is a Cystic Fibrosis Warrior!

Wow! I can’t believe I am going to be a junior in high school! My sophomore year wasn’t the easiest, but I made it! The summer before my sophomore year they found Mycobacterium Abscesses deep in my lungs. I missed the first week of school due to a port placement to start IV antibiotics. My mom, my nurse, was trained to access and de-access my port so I could still play sports. I play volleyball, basketball, and fast pitch softball. Sports help me stay healthy, work my lungs, and keep me mentally healthy.

The new meds made me sick, I was nauseous daily. As the meds worked I lost weight, weight I fought so hard to gain. Three months passed and twenty-seven pounds lighter they switched me to oral antibiotics only. Life was getting a little better. Still not feeling the best I forged on! Four months of oral meds, weighing in 30 pounds heavier (thanks to McDonald’s chicken nuggets and chocolate shakes) and my FEV1 was still increasing they finally said I could be done with the meds. My new goal was to maintain my numbers. June my numbers decreased a little and back on oral antibiotics I went. It’s a roller coaster!

I was diagnosed with Cystic Fibrosis when I was 2 days old. Born six weeks early, Dr. Ocejo was on watch and I gave him some signs that made him test for CF.

When I was younger my CF made it difficult for me to gain weight. After a G-tube placement the weight became a little easier to put on. Vest and neb treatments were considered maintenance, like brushing your teeth to avoid cavities.

I had my first CF hospitalization when I was in 5th grade. I really didn’t even consider myself sick until then. Everything I did was just my normal. I still don’t really look at myself as sick, but I did know that I had to do treatments and take pills to stay healthy and active. I have been in the hospital a couple times since then, but last summer was the longest.

My mom tells me how fortunate we are to have all these amazing people that are here to help us.

CFA of ND makes it so much easier for us to travel back and for to Minneapolis for my appointments. I had to make many trips this past year and I hate missing school! We would fly down in the morning and back the same day. CFA provided financial assistance to make this easier for us. I have also been on some amazing medications that have helped me stay healthy and many of those came with a big price tag! Again. CFA helped ease the cost of those meds and helped me stay healthy.

Meet Ella: A Cystic Fibrosis Warrior

pthompson@cfand.org (Pamela Thompson) — Tue, 03 May 2022 15:51:08 GMT

This Two-Year-Old has a Bright Future!

Young Ella, daughter of Jason and Teri Kujawa, is the inspiration for the Inaugural “Roses For Ella Ride”, scheduled for June 25, starting and ending at Traditions Restaurant and Bar in West Fargo.

Ella is a goofy and funny little girl. She is always trying to get a laugh out of anyone who is around her. She loves to join in and laugh at herself as well. She’s very playful and energetic and thinks everything is a jungle gym. Ella also is extremely independent and a bit stubborn, she must do everything herself and gets upset if you try to help her.

Ella’s favorite things to do are play with her dog, Binx, cuddling while watching movies, and going swimming. She has an obsession with shoes, and even has a better shoe collection than her mother. Ella loves music and dancing. One of her favorite songs is “Let it Go” from Frozen. She tries to sing along, which is the cutest thing ever.

Ella is a very easygoing little lady and doesn’t really dislike much. Her biggest dislike is when mom or dad leave for work.

Ella was diagnosed with Cystic Fibrosis at 7 days old. She has two copies of the f508del mutation.

Her parents never really thought anything of the newborn screening; they had no reason to worry about it. Ella looked and seemed perfectly healthy. Neither Jason nor Terri knew they were CF carriers before the diagnosis. (Nearly 10 million Americans are carriers of the faulty CFTR gene that causes CF—that breaks down to 1 in 35 are carriers.)

It was an extremely scary and emotional time when Ella was diagnosed, as this new family knew nothing about cystic fibrosis. Then, they scoured the internet and came to the worst conclusions.

At their first CF clinic visit they became more educated about the advancements in medicine and the ability for Ella to live a relatively normal life. So far, they have been very lucky. CF’s effects on Ella have been minimal. Aside from the occasional miscalculation on medications causing tummy troubles, Ella has not had any complications. Ella even tested positive for COVID-19 on Halloween of 2020, and only suffered a slight fever.

Ella does her vest treatments twice a day along with her nebulizer treatments twice daily. She takes Orkambi morning and night and Creon every time she eats. She’s a big girl and likes to take her vitamins by herself. She has come to love applesauce!

Jason and Teri hope for Ella to live a normal life. They want her to experience all the best things life has to offer. The hope that she gets married and has kids, so she can experience the joy that she brings to their lives. They hope Ella can make her diagnosis into an opportunity to make her mark on her community by helping bring awareness to CF.

Meet Joseph: A Cystic Fibrosis Warrior

pthompson@cfand.org (Pamela Thompson) — Fri, 24 Jul 2020 13:39:10 GMT

Our Youth Ambassador Has Big Goals!

First, some words from Joseph :

Hello. My name is Joseph. I am 14 and I have Cystic Fibrosis.

It doesn’t really affect me in public unless I am doing long periods of activity like running, swimming, and other things. At home, it is a different

story. I have to do 2 vest treatments and nebulizer treatments every day, and most of the time my legs go numb and its hard to stand afterwards. I also take a ton of pills, which you know, everyone with CF has to take. I also have CF related Liver Disease.

I find a lot of fun in video games because they help me pass time while doing vest treatments and long car rides to CF doctors. They also help with the depression from it because they give me a chance to live a magical journey with no predetermined path for me to take, unlike real life.

Another thing about me is I don’t like the outside, so I sit around all day watching YouTube videos. Believe it or not, that’s where

most of my knowledge comes from. My favorite YouTube channels are Kurzgesagt, Lathland, and Matt Lowne. (editor's note: Joe had the opportunity to go hunting with Carson Wentz last fall, and learned that the outside may not be so bad after all!)

I love space because there is so much we don’t know yet about it and my dream is to find an intelligent species other than humans from another solar system, because if we get obliterated by them at least we know we aren’t alone.

People with CF aren’t very different; we just have a disease with no cure (yet) is all. CF is just another challenge of daily life that people like me have to do deal with, and if you have CF and are reading this, then don’t give up. No matter what, don’t give up.

And here are some words from his mom:

The initial diagnosis was heart breaking. Joseph was in the NICU, we found out he had CF at 7 days old after having surgery at 5 days old.

It felt like a death sentence for my child. How do we do this as a family? How do you fight this invisible “disease”? Are we going to lose our child at a young age? Will he be able to have children? Will he need a transplant? What if he cultures a certain bacteria? All these questions were running through my mind, among other fears. It was overwhelming to say the least.

We lived 4 ½ hours from the hospital and could not stay there every day. Every time we left to go home, I cried and was so jealous watching other parents leaving with their newborns. So, we began going to the CF Specialist every month, and getting overwhelmed with information and medications. We got used to it or as used to it as much as you can. It became our “normal”.

Josephs first "tune up" was hard on me as a mother. I knew no one in the city/hospital other than his doctors. His veins would blow every other day, so having to do multiple I.V.’s in a 14-day stay was hard. He now gets a PICC line every hospital stay.

Now, let’s talk about the depression that hits the patient while they are in the hospital. It is VERY real. The last hospital stay we had; he broke down crying. We now live about 9-10 hours one way from the hospital/home. We had no visitors, no friends around, confined to the room. Staring at the same 4 walls, the same outside view, gets OLD FAST. Now factor in its Christmas, as you can imagine that makes depression even worse. It’s hard to not be able to help your child by yourself. They may not want you to help, they may need to talk to someone else who isn’t you. I cried with him for about 2 hours before he fell asleep. It was hard asking for help, but it needed to be done. DON’T BE AFRAID TO ASK FOR HELP!!!!!!

Most people don’t think your child is sick. Why? Because they look healthy. I have been asked for proof of diagnosis from employers and teacher’s because they see him, and he doesn’t look sick. He is almost 15 now, has decent weight and lung function. I get told he isn’t sick, there isn’t anything wrong with him. At this point I explain CF is an invisible disease. I tell them on his “good” days he does 2 hours of breathing treatments a day and every 4 hours around the clock when sick. He takes upwards of 30 pills EACH DAY, specialist every 3 months, hospitalizations as needed. And this does NOT include his normal pediatric doctor or other specialists that he sees. On top of having CF, he also has Chronic Liver Disease, depression, chronic sinusitis, and a few other diagnoses. So yes, he may not look SICK, but he is and we as a family fight it EVERY DAY. It’s not easy, lets face it, it can be DRAINING, and you don’t WANT to do the treatments all the time BUT you DO. Why you may ask? BECAUSE if you/we don’t, we may lose our loved one before its their time. We fight every day so that we can have MORE days with the person.

Remember you are not alone in this fight. There are other parents/care givers out there that know what you are dealing with for the most part. We all fear losing our child/children early. CF is a BIT*H, but we fight every day to find a cure. This is one fight that I will gladly participate in.

Your gift can help Joseph, and others like him, to #BreatheEasier. We cannot do the things we do without YOU!

Meet Logan: A Cystic Fibrosis Warrior

pthompson@cfand.org (Pamela Thompson) — Fri, 17 Jul 2020 15:51:22 GMT

New Medications Offer This Teen a Bright Future

I first met Logan about six years ago, early on in my tenure with the Cystic Fibrosis Association of North Dakota. She was due to ride in a CFA car through a Bismarck parade route for the annual AutumnFest Parade as our Youth Ambassador. I cannot remember the exact details, but something went awry with our car plans. So Logan's mom, Nikki, and Logan, and I walked the 2 mile route that morning.

Between waving and smiling, I got to know an amazing CF mom and her even more amazing daughter.

Logan was born in 2005, luckily in the state of Colorado, a state that thankfully had newborn screening for CF at the time (North Dakota does now!). She was monitored with 2 blood tests and she had her first sweat test and cystic fibrosis diagnosis at 28 days of Life. After the whirlwind of emotions and doctors at the Children’s Hospital of Denver, Logan's family learned how to take care of their little girl and then also made the decision to move back to Nikki’s home state of Minnesota to be closer to family and the University of Minnesota!

There were typical toddler years of fighting a greased pig to get into her treatments learn to swallow pills and a major sinus surgery. Raising a child with CF is no cakewalk!

2012 Logan's family was presented with a clinical trial to try a modulator for Logan- her genetics are very rare-- one that 4% of the population has and the other they do not have any info on so they always thought we would be one of the last to try something like this. Large discussions had to happen as she was 6 and it involved 3 years of blood tests, MANY glucose tolerance tests, liver tests and eye exams. Were they doing the right thing for her and the future? Logan's mom can honestly say CLINICAL TRIALS are amazing, they got to know so many of their doctors so well and many of the adult staff they will work with in the future AND then they able to get into another trial for the Endocrinology Department on insulin that was a game changer.

I met Logan and her mom about a year into this trial, and wow, the HOPE that both of them were able to express was contagious!

Logan is now 14 years old, she is 5 feet 10 inches tall and looks amazing!! (it is not uncommon for many with CF to be small statured due to complications of CF.) She just had another sinus surgery this year (10 years after the first and they were told they might have to have it each year!!) She is happy and healthy!

And we, as an organization are SO happy to see her doing so well! Her mom, Nikki, rightfully credits the CF Foundation for Logan's health and success--and she is right--the research and advances that have come out of the Foundation are AMAZING! But, Nikki is maybe a bit too humble. She and her husband have set Logan up for great success--they have an unwavering dedication to Logan's health--insuring that she eats well, that she takes measures to avoid illness, that she learns to manage her medications and treatments, and they give her SO MUCH support!

Logan is also an accomplished artist! I have one of her lovely paintings hanging in my office, and she also designed the front of our CFA Christmas card this past year.

Logan has a #HopeFilledFuture and I can assure you that we will be cheering for her every step of the way!

Meet Molly: A Cystic Fibrosis Warrior

pthompson@cfand.org (Pamela Thompson) — Thu, 09 Jul 2020 14:01:41 GMT

Not all cystic fibrosis diagnoses are given at birth.

(As told by Molly's mother)

Our cystic fibrosis journey has been an interesting one.

Molly is our only child and with in days of her birth she was having eye surgery in both eyes to correct congenital cataracts. She had both lenses removed and had to wear contacts as a tiny baby. She had glasses as well that did the same thing as her contacts but only would wear them at home due to the large thick lenses. We called them her "big eyes" as they magnified her eyes so much. Kids can be so unkind to anyone who is different so we made sure that Molly was comfortable and happy with her contacts and glasses. She didn't go to daycare, so my husband would take her with him to work and she was always pleasant and happy.

Our families all live far away so Molly grew up not really knowing her extended family. Her world was her father and I, and that seemed to be just fine to her. Even as a little girl she was so tiny and frail, but full of energy. Constant bowel issues, not wanting to eat, and always coughing. We would take her to doctors and they would treat the symptoms and she would get better. It was a cycle, but we didn't really question anything.

Molly would always keep her attitude up and would work through her daily challenges. She has a sweetness empathy that is so unique and to her. She never met a stranger, only friends.

School however, was a challenge for her as Molly suffers from learning disabilities and ADD. She was in speech programs and had to take PT and OT therapy to catch up on her delays. She worked hard to keep her grades up and to keep up with her peers. Although she loved to play, she struggled with hand eye-coordination and had a hard time with physical activity. We would tell ourselves that she was just a "late bloomer" and she would be fine once she got older and stronger.

Once Molly entered middle and high school she struggled more with her health, she had a nagging cough that would just come and go. She was always tired, didn't want to eat seemed so frail. She had lens implants at 15 for her eyes and she is able to see without the need for special glasses and contacts. She wears reading glasses and is able to drive a car, something we never thought she could do.

After high school her illnesses seemed to get worse. She was wanting to stay home and sleep, coughing day and night and getting so weak. My husband took her to the doctor...again..hoping to get some answers.

We were lucky that for a short time there was a doctor visiting who had her take some x-rays. He told us that she had CF and we were shocked! She was 19!! How could this have gone on so long and we never knew?

My husband and I felt terrible guilt. We had been so focused on her eyes and her learning issues that we never thought this could happen.

Once again it was Molly who took the lead. She said she was glad to know now she could get help. I am amazed at her resilience and positivist attitude! So we started the regimen of breathing treatments, and medications and she has been responding well. She is healthy and has color to her face and she is looking towards a future.

With all she has been through I am so proud of Molly. She is a wonderful young women and daughter and I am so excited to see what the future holds for her. She will still struggle with her health and her learning disabilities but she has a FUTURE now...and that is the most important thing!

10th Annual Walk/Run in Memory of Sonia

pthompson@cfand.org (Pamela Thompson) — Tue, 30 Jun 2020 18:26:43 GMT

Help us reach our goal of $100,000 raised from this event!

The tenth (and final) Walk/Run in Memory of Sonia Balliet-Heidenreich is scheduled for Saturday, September 5 at Oak Grove Park in Fargo. The walk/run will kick off at 10 am and will be followed by a lunch (details on lunch to be determined pending current COVID status.)

The Balliet family has some lofty fundraising goals for this tenth and final event. Over the course of this event $85,000 has been raised in memory of Sonia in hopes that people living with cystic fibrosis can #BreatheEasier. The Balliet family is hoping to raise $15,000 at this walk to meet the $100,000 mark.

If you have not joined us for this event before, this would be a great chance to see, first-hand, the love and connection CF families have for each other.

The “Sonia Walk” is great fun for people of all ages and athletic ability. It is a wonderful way to spend a Saturday morning to celebrate a life well lived and to support families that are living with the very harsh realities of Cystic Fibrosis.

CF Does Not Take a Break! We Still Need You!

pthompson@cfand.org (Pamela Thompson) — Tue, 30 Jun 2020 18:22:09 GMT

Even during a global pandemic (or especially because of a pandemic) we need your help!

Phew! It has been QUITE a spring!

I spent most of the spring holed up at home with my laptop and four kids—balancing work and homeschooling, and admittedly, baking too much homemade sourdough bread.

At first, slowing down my usual life was a welcome retreat. But, while my busy life slowed down, my worry ramped up. What if my parents caught the virus? What if my husband or I did? What about my kids? There were (and are) so many unknowns surrounding COVID-19. What are the best ways to prevent it? What is the best way to treat it? Will I die?

As I spent many a sleepless night worrying and praying, I came to the realization that I was, for better or for worse, walking, in a small way, in the shoes of our cystic fibrosis families. The harsh reality is that our friends with cystic fibrosis live with these same fears—not only in times of a global pandemic—but every single day of their lives.

Hand washing, disinfecting, sanitizing, staying home, avoiding crowds, staying six feet apart from others—all of this is just another Thursday for someone living with cystic fibrosis. And, like COVID-19, cystic fibrosis has no cure or vaccine.

As we, as an organization, learn to navigate the murky waters of operating during a global pandemic, we face the reality that the needs of the CF community are higher than ever. We have members who have had to give up jobs in order to stay home and stay safe. We have some who have upped their daily physiotherapy in order to keep their lungs strong and healthy. Our members still need their regular medications. They still need to visit their physicians in order to monitor their lung functions and to stay healthy.

Cystic fibrosis does not take a break, and neither can we.

Our traditional fundraising streams are a little drier than a “normal” year—but our needs are still real—and are life and death.

So, I am asking you, our faithful supporters, to examine whether you can support us monetarily during these uncertain times. I am aware that these times have been tough for many of you as well. If you are in a position where you have been less economically affected by COVID-19, I am asking to give, and make an impact in the lives of our friends living with cystic fibrosis.

CF never takes a break, and neither can we.

Stay safe, and stay healthy.

2019 Holiday Homes of Hope was a Stunner!

Mon, 13 Jan 2020 17:37:55 GMT

From November 7-10, the Cystic Fibrosis Association was focused on the lovely community of Oxbow, North Dakota. Seven generous homeowners opened their hearts and their homes to our tour this year and our designers worked their holiday magic. The oxbow homes were stunning to begin with, but our team of designers took things to the next level!

Still Six Feet Not Five! Cystic Fibrosis Association Thoughts on the Movie, "Five Feet Apart"

Thu, 07 Mar 2019 17:37:55 GMT

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.

Kids Helping Kids

Mon, 03 Oct 2016 16:37:55 GMT

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.