Join The Fight Against CF!

Our very own Krista Chenoweth talked about her handsome boys and their journey with Cystic Fibrosis.

While spreading hope, she also wants to spread the word on how to join the fight against CF!

Below are 6 different ways to join the fight!!!

CFF

“The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.”

The Cystic Fibrosis Foundation is responsible for the countless strides made in therapies, treatments, and medication for Cystic Fibrosis. One day (soon) the CFF will be the reason CF stands for Cure Found. The Cystic Fibrosis Foundation is also the #1 reason why Cystic Fibrosis is the most amazing story in medicine.

Webpage

Facebook

Instagram

Colton Underwood Legacy Foundation

“The Legacy Foundation is a non-profit organization that was created by former NFL player, Colton Underwood to empower people with cystic fibrosis to live fully, dream big and support each other. The Foundation raises funds to provide equipment and resources for people of all ages living with cystic fibrosis.”

The Legacy Foundation’s most recent campaign was the “Inspiring Fitness Challenge”. The goal for this campaign was to raise awareness, create individual fitness goals, and raise $40k— we ended up raising $53k!!!!

The Legacy Foundation has given me SO much excitement. Being newly involved with their overall mission, it just feels like one big team has come together to lift people with CF up. People with CF are true warriors, and the Legacy Foundation won’t let anyone forget that. From “Warrior Wednesday” posts, to successfully supplying people with equipment that’s desperately needed, the Legacy Foundation is always celebrating.

You can get involved in charity events, research, or shop, here! ⬇️

Webpage

Facebook

Instagram

Sickboy Podcast

Sickboy Podcast- “Sickboy Podcast is hilarious, ridiculously insightful and absolutely determined to break down the stigma associated with illness and disease! The show started with three best friends who recognized that when faced with difficult situations, illnesses and diseases, people tighten up, they get awkward, and they simply don't know what to say. Taking the lead from Jeremie's life long battle with Cystic Fibrosis, the boys help people understand that sometimes the best way to deal with illness, disease and life is simply to laugh. Join the conversation every Monday over on iTunes, Soundcloud, Google Play or wherever you get your podcast fixin's”

These. Freaking. Men. Oh my gosh- I’m not a big podcast gal, but I’m hopelessly addicted to Sickboy. I was first drawn to it after watching the documentary (under the same name) after having a beer during the boys’ naptime, and feeling ballsy (up until this point, I haven’t watched anything on TV that had even a smidge of CF). Sickboy has taught me to LAUGH when it may be inappropriate, or frowned upon. It has taught me that I’m allowed to joke, while simultaneously taking things seriously. Oh, Sickboy, the love I have for you is immeasurable. You gross son of a gun.

*DISCLAIMER*

This podcast is raunchy, gross, and absolutely hilarious. If you’re offended by a few F bombs, and conversations that might make your stomach turn, you may want to sit this one out. If bad language and brutal honesty is your bread and butter (like it is mine), head to the website! ⬇️

Webpage

Facebook

Instagram

Gunnar Esiason

“Gunnar Esiason is a cystic fibrosis and rare disease patient leader, who is passionate about early stage drug development, patient empowerment and health policy. He is a MBA second-year student at the Tuck School of Business at Dartmouth and is also working towards a Master of Public Health degree at the Dartmouth Institute for Health Policy and Clinical Practice. At Tuck, Gunnar serves as a Tuck Center for Health Care MBA Fellow, a health care club co-chair and a club hockey captain. His first year course work included a First-Year Project with a health insurance start-up. Prior to Tuck, Gunnar received a BA form Boston College in 2013, worked on an enteral feeding product at a medical nutrition company, was appointed to the board of directors at the Boomer Esiason Foundation, and was the head coach of his high school alma mater’s varsity hockey team. Gunnar maintains the roles of patient advocate and director of patient outreach at the Boomer Esiason Foundation.

He has consulted on clinical trial development, a real world evidence population health study, and a cystic fibrosis-specific mental health and wellness screening tool. In 2019, Gunnar delivered the pre-commencement address at the St. Louis University School of Medicine commencement exercises. He has also been featured as a keynote speaker at more than two-dozen top medical centers, biotech conferences, and health industry events across the United States. His health policy opinions have been featured in Newsweek, The New York Daily News, The Hill, STAT News and Morning Consult among other news sources. A list of Gunnar’s publications can be found on the publications page.

Gunnar is presently working on an antibiotic market research paper with the hopes it will encourage industry and policy leaders to prioritize antibiotic development and innovation. Follow him on Twitter @G17Esiason.”

Gunnar was one of the first adults with CF that I discovered during my early research. He’s responsible for a large portion of my CF knowledge, and the reason for a lot of my hope for the future for the CF community. Thank you, Gunnar, for using your diagnosis as a platform to educate, discuss, and spread awareness about Cystic Fibrosis. Thank you for reshaping the way I thought about CF, shortly after my firstborn was diagnosed.

Webpage

Facebook

Instagram

Nathan Charles

Nathan Charles- “As the only professional athlete playing a contact sport with cystic fibrosis, I’ve faced my share of obstacles. But I never let it define me.

I now want to use my experiences to help others see what’s possible.”

Nathan Charles is the first success story I found when researching Cystic Fibrosis, after finding out Simon was diagnosed. He gives me so much hope for the future, and taught me that I will never dream “too big” for my boys. I hope to teach them the same (I always think Simon will be in MLB, and Abel will be in the NFL 😁). Nathan Charles is a former Wallaby rugby player— of course, the first (and currently, only) professional athlete with CF just so happens to play one of the most dangerous contact sports of all time. Cheers to you, Mr. Charles!

Webpage

Facebook

Instagram

James Richardson

James Richardson- “Motivating everyone around the world with – or without – chronic illnesses.”

James is a Cystic Fibrosis warrior and advocate. When James was a child, he was told he’d never be able to play sports. After pushing himself to beat the odds, he tried out for and excelled in every sport he could. Now, he owns #InsightFitness, located in Los Angeles, CA. His most recent lung function test was 100%.

Ensuring my boys know what it is to be tough, and to take CF by the horns, is something that has been extremely important to me from the very beginning. James has helped me stay optimistic in the vision I have for them. My hope for them is to be strong, prove anyone wrong if they say they can’t do something, and rise above any weakness that tries to set in. Thank you for the endless inspiration, James.

Webpage

Instagram

CFF Blog Post

Taking It By The Horns

by Krista Chenoweth

I want to start off by telling you not to say you’re sorry. People in the CF community know how to fight. We’ve all come up swinging more often than not—and we’re winning. Don’t say, “those poor babies”. Nothing about these babies is poor. Nothing.

My oldest son, Simon,

Simon at clinic - January 2020

was diagnosed with Cystic Fibrosis at 2 weeks old. He’s now a year and a half old, and completely symptomless. Receiving such a horrifying diagnosis as young, new parents, was paralyzing. We received the diagnosis on my 25th birthday. My husband, Jake, was 28. I remember crying to God, yelling at the top of my lungs, “Not my baby!” over and over, hoping He would hear me and take it away. Jake held us both in his arms while I cried into my new baby’s pretty blonde hair.

We cursed, yelled, and fell apart. But we put each other back together again. This doesn’t change a thing—Simon is ours. Jake said, “Simon’s going to take CF by the horns.” And that’s exactly what he did. His doctors wanted him to gain 8 ounces a week—he gained a pound a week. He smiled, laughed, held his head up on his own, all entirely too early. His pancreatic enzyme tests all came back normal, and his chest X-ray came back completely clear. There are 220 recorded cases in the US of Simon’s specific mutation. 80% have to take enzymes to gain weight— Simon is in the 20% that doesn’t. His lungs are clear, and functioning perfectly. He breathes easily. Every day, we give all glory to God.

We learned a lot in those first few weeks. About our baby, about each other, and about CF. Although, it did seem like there weren’t any stories of minor/asymptomatic cases, other than ours. Even with Simon’s health, Jake and I still found ourselves catching fear and hideous thoughts creeping up on us. Healthy cases of CF just didn’t happen. I didn’t take my research too far without being horrified, and backing away from the stories that fueled my own fear. So, Jake and I started telling our story. We started educating people. We started fueling people with hope for a cure. We corrected people who thought a CF diagnosis was a death sentence. We started planning an annual fundraiser to support the Cystic Fibrosis Foundation. We told people, “don’t look at him and think he’s sick”, just as God told me when Simon was a newborn.

When Simon was seven months old, I found out I was pregnant, again! I spent that first night a nervous wreck. Jake and I knew we wanted more kids, but I wasn’t ready to face the possibility of another CF diagnosis. The anxiety only lasted the night. Throughout my entire pregnancy, I was certain I was carrying a healthy baby. Our second son, Abel,

Abel’s first clinic visit - July 2020 (peep the O2)

was born this past June. He is absolutely gorgeous. The first two weeks after his birth went by, with an abnormal heel stick heavy on my heart and mind. I knew my new baby was healthy—but I didn’t know if he had CF or not.

Jake took our sweet Abel to Riley Hospital for a sweat test. After the test was complete, I spent the day with Abel, while Simon and Jake went to the fair. We went on a walk, picked wildflowers, listened to Lynyrd Skynyrd, and napped. It was a perfect day. Around 5pm, I got the call that Abel, too, was positive for Cystic Fibrosis. We’re officially 2 for 2. I wasn’t surprised, but I wasn’t happy. This time around was easier, but it still wasn’t easy. I was confident Abel was healthy, but I was pissed about the positive result. For a little while, I felt like God had dropped me and left. I felt alone, and even punished. That didn’t last long, as I was quickly reminded that this battle has already been won. I’m reminded every time I look at Simon, that Abel will continue thrive. He’ll continue to completely astonish me in his own way. He’ll keep gaining weight, and breathing easy. I’m reminded every time I look at Abel, that he, too, is made in God’s image. I’m reminded by close friends and amazing family, that we’re not alone. Simon is my strength, and Abel is my peace—and they have absolutely no idea.

Simon & Abel’s first clinic visit together - July 2020

If I had to give advice to parents with a brand new baby, with a brand new CF diagnosis, it would be this—not every case is going to shatter your world. God has chosen the CF community to begin curing. Strides have been made in research, therapies, and medications, even just since Simon has been born. Hope is ever present. Move forward knowing you’re not alone, and you will NEVER be alone. Teach your children to fight, to be a voice, and to take CF by the horns. Talk about it. Educate those who don’t know. Re-educate those who think they know. A cure is right down the road, and we’re coming up on it quickly. Us, in the CF community, don’t scare easily. You’ll learn that, too.

Our Beautiful, Strong Family

Bio;

Krista Chenoweth

Mother of two children with CF

Krista is a 26 year old mother of two sons, Simon and Abel. Both boys have been diagnosed with CF. Krista is a stay at home mom, with growing attempts to become active in advocating for the CF community through fundraisers, benefits, and campaigns for the Cystic Fibrosis Foundation, Colton Underwood Legacy Foundation, and Riley Hospital for Children. Krista’s house is full of boys, dogs, pizza, Motley Crue, and Jesus. Krista lives in small town Portland, Indiana with her husband, Jake, sons, Simon and Abel, and dogs, Reggie and Opie.

Follow Krista in social media for updates! Facebook

https://www.facebook.com/krista.taylor.33

Twitter

https://twitter.com/krista_lou12?s=21

Instagram

https://instagram.com/krista_lou12?igshid=135d28170h48

EASY BAKED SPAGHETTI

Looking for a way to spice up your normal, everyday spaghetti? THEN YOU ARE IN THE RIGHT PLACE!

Here’s what you need:

Spaghetti noodles

1 lb ground beef

Spaghetti sauce

One bag of shredded cheese

Box of frozen garlic bread

As you guys see all of this is Meijer brand because this was bought during the COVID pandemic and the shelves were literally cleared of everything, plus I think sometimes Meijer brand tastes better than some name brands! Its up to you what brands you want to use, I am only here to guide you on what to do!

Of course you are going to brown your meat and cook your noodles! TIP FOR COOKING NOODLES: let the water boil before you put the noodles in, you will also want to break your noodle in half so you’re not only cooking half the noodles before they get bendy!

When your noodles are done you’ll put them in the strainer then RUN COLD WATER OVER THEM so they don’t stick together. V E R Y I M P O R T A N T! You are also going to want to drain the grease from your meat on a paper towel and plate.

While you’re letting these drain, you will replace the pot that had the noodles in it with the sauce and cook that on a low heat to get it heated up a little.

Next ADD YA MEAT ADD YA NOODLES AND STIR!

After you get everything all mixed together, you will transport your concoction to a cook-sprayed pyrex. ADD CHEESE ALL OVER THE TOP!

And of course, what’s spaghetti without garlic bread????

For the spaghetti you will want to heat the oven up to 350 Degrees and cook for 20 min!!! (For cooking the garlic bread the box will tell you exactly what to do!)

AND VOILA!

Your tastes buds will love you :) and your family will be pretty happy too! Linkyn loves this dish!