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CF Peer Connect

Raising Cody with Cystic Fibrosis, we did not have the opportunities that are being offered now. We missed out on all the new medications that extend lives, and we did not have the connection with the CF world that so many of you have.
 
The Cody Dieruf Benefit Foundation is proud to promote to you CF Peer Connect. You are not alone living with Cystic Fibrosis(CF). CF Peer Connect is a topic-based peer mentoring program for people with CF.
Ages from 16 and older.
 
It is known that Cystic Fibrosis can be a lonely disease. I know this, I lived it.
 
Through this program, those of you with CF can talk with and learn from someone who has gone through a similar journey. Please share.
 
cff.org/PeerConnect
www.breathinisbelievin.org
#breathe#cysticfibrosis#peerconnect#CFF#CodyDieruf

 

Hi, My Name is Tyler

 

Hi, my name is Tyler, It’s interesting how hard it is sometimes to tell people I have Cystic Fibrosis. I don’t hide the fact that I have CF and I like telling people about it when they have questions, but for some reason if people don’t know I have it I don’t like talking about it. I don’t like feeling that people view me differently, I like feeling the same as everyone. However, the truth is that I am different. I have more things I need to do to try and maintain my health and that’s ok. It’s ok to feel self conscious and to feel insecure sometimes. We all go through ups and downs and it is never weakness to recognize that we aren’t perfect. With each passing year, the more I realize that everybody has something they are dealing with, some things you can see and others you can’t. We are all imperfect people and we sometimes forget that. It’s ok to go through tough times, it’s ok to feel sad, the most important thing is to remember that you are loved and can get through it. I hope we can all be more caring and understanding of each others individual hardships. We are all in this together!

Vertex Pharmaceuticals Stands Behind The Cody Dieruf Benefit Foundation

The Cody Dieruf Benefit Foundation is excited to announce that VERTEX PHARMACEUTICALS INCORPORATED has granted us funding to continue with granting scholarships for our Recreation and Fitness Program. To the families in Montana living with Cystic Fibrosis and would like to apply go to www.breathinisbelievin.org and fill out an application.

It is a proven fact that exercise and fitness can help maintain lung function.

Thank you Vertex for believing in us. To learn more about Vertex go to https://www.vrtx.com

 

Mother of the Month for February 2019

 

Finding out your first born has a disease is so many things…
Hard to accept
Lifechanging
Stressful
Sad
and on and on.

 

At 23 I was like most first time expectant mothers. Naïve to the possibility that everything wouldn’t just be perfect. When we received confirmation that she had this thing called Cystic Fibrosis(CF) I was actually relieved. I have always been the person who would rather know the worst so I can work the problem.

Having it be your child is another new level and will teach you who you are and just how strong you can be.

This journey has been incredible. Incredibly hard. Incredibly beautiful.

For most of our daughters life, our biggest struggle was just keeping weight on her. Which ironically is hard
when the rest of the world is trying to loose weight. I have always told her to look for the positives. While we have always fought to keep things as normal as possible, these kids are anything but normal.

Breanna has always been my creative artist, gypsy, bohemian, tyrant, comedian and stubborn girl.

Now she is 18 and married. How did this happen? Where did the time go? When she was diagnosed her expected life was only 18 years.

We are so grateful for every day and that we survived the teenage craziness. Now we get to watch the next chapter unfold. Blessed each day.

2019 NCAA March Madness Calcutta

We all want a cure for Cystic Fibrosis(CF) and we all want to see our families living with CF given quality of life.  The NCAA March Madness Calcutta is striving to make this happen.

 

Please join us on March 20th, 2019 at Butte Country Club in good ole Butte, MT.

The Cody Dieruf Benefit Foundation is proud to be a part of the 2019 NCAA March Madness Calcutta. This is the 6th Annual Cystic Fibrosis Benefit and our first time being involved.

Meet Former Butte High and University of Montana star Colt Anderson  as the special guest of the evening . The public is welcome to attend.    Registration will begin at 5:30 p.m and the auction will be held at 7:30 p.m. at the Country Club.

Appetizers will be served. The public is welcome, but you must be 18 or older to attend. The Calcutta auction is licensed by the State of Montana.

90% of the total bids will be paid back to participating bidders, 10% goes to Cystic Fibrosis Foundation and a portion of the silent auction items go to The Cody Dieruf Benefit Foundation.

Come to Butte, MT and enjoy this fun evening with friends. 2019 FINAL poster

 

Meet Our Mother of The Month

Meet our Mother of the Month, Mandi Tooker and her son Eric and his twin sister Paige. Here is The Tooker Story.

August 2014 was supposed to be a routine well check up for month old Paige and Eric. That appointment turned into a devastating blow, “Eric tested positive for Cystic Fibrosis on his newborn screen” the pediatrician said as he sat on the chair, trying not to show how upset he was for just laying such heavy news on us, a family he has known for 30 years. For over a year we went to many appointments with still no real true answer if he did have CF, but needed enzymes to even eat any food which is a big part of Cystic Fibrosis.(CF)

April 2017 we venture to Boston Children’s hospital (after our local specialists just could not help him) for a GI appointment. This doctor not only figured out what was wrong with Eric’s GI issues but also that he did in fact have CF and needed to be seen by pulmonary ASAP. August 2017, almost 3 years to the day the new pulmonologist says “Eric does have Cystic Fibrosis and we will be treating him with vitamins and increase enzymes to help him. Also we really want him to eat bacon!”

Eric has overcome many obstacles with his GI issues and his CF in general, once we got the right doctors and right medications he was able to exceed expectations and thrive for the first time in 3.5 years!
Eric is not only a boy with CF, he is also a boy who loves horses, his life revolves around them, and when he can spend some time at “his horse barn” with his best equestrian friend, Oakie, and muck stalls. He loves his family immensely, his toys, and of course movies and tv!

He is loved to infinity and beyond by so many!

www.breathinisbelievin.org

Chronically Salty

 

My name is Tyler Cowley and I have Cystic Fibrosis.(CF) I started an Instagram page to help people feel like Cystic Fibrosis is manageable, even through tough times. If you would like to see the page, it is @mycflife. 

9 months ago, Myself and a team of people started a new business called Chronically Salty chronicallysaltyclothing.com in hopes that we can bring hope to those with Cystic Fibrosis and create a community of people who know that they are supported in this lonely world of Cystic Fibrosis.  We at Chronically Salty want to inspire people to get out and get active to obtain good lung functions.  The entire idea that inspired Chronically Salty was linked directly with Cystic Fibrosis. When people with CF sweat, it is extra salty, making them “chronically salty.”

Our mission is to help spread awareness about Cystic Fibrosis through Chronically Salty, while also helping by sending funds to the Cystic Fibrosis Foundation or helping individuals who may need support to move forward toward better health.

Right now we know of a 14 year old gal in Butte, Montana who needs to be evaluated for double lung transplant due to her Cystic Fibrosis. Since I have CF, I know what it is like to walk this journey and I want to help create awareness of CF and inspire others to help in this process.  At Chronically Salty, we wanted to help support Bridget and her family an any way possible because everyone deserves a chance to live a happy and healthy life.

You to can help, go to chronicallysaltyclothing.com   
and purchase an item.  Chronically Salty Clothing will donate a part of the proceeds to “Saving Bridget Campaign” affiliated with The Cody Dieruf Benefit Foundation.
Chronically Salty Team
Tyler Cowley

 

 

Tennis Doubles Tournament a Big Success

 

18 year old Madison Ivey from Rockwall, Texas knew she had it in her heart to reach out to a family living in Butte, MT who has a 14 year old daughter who needs a lung evaluation for a transplant due to the affects of Cystic Fibrosis.

She organized a tennis tournament to raise funding to help The Cody Dieruf Benefit Foundation in assisting Bridget with her expenses in Houston Texas at Children’s Hospital.

Madison Ivey Blog: ” My heart is completely full and I am  thankful to each and every person that came to the games.  I have so much gratitude in my heart for The Cody Dieruf Benefit Foundation.  You all came together and became a part of something to help another person living with Cystic Fibrosis.  You never gave up hope, even after the loss of Cody.  I am in awe of the love that was shared today at our event.  It was the most beautiful day and Cody was with me in spirit the entire time.  Thank you from the bottom of my heart in supporting a cause that means so much to me.  We love and support you, Bridget, all of the love from Texas”

In Rockwall, Texas, Madison raised over $1,000.00 in support of our Saving Bridget Campaign.  CDBF thanks Madison Ivey and all of her volunteers that came forward to help make this tennis tournament a big success.  You also raised a lot of awareness  of cystic fibrosis which is so important in our work

 

Mother of the Month

Meet Lanor, our Mother of the Month of December.
 
What is in a name? Well be it told, Adaira is specially named with a story. In her moms words, “I never had a boy so I could use the middle name of Adair, after my dad and my grandfather. So I gave her the name Adaira. Needless to say, my dad was touched.”  Her name goes back to the 1800’s in family history.
 
We decided on the name after I talked to my grandfather before she was born. Shortly after we found out she had Cystic Fibrosis he told me that she was not the only baby it in the family born with CF. And he died before I had a chance to ask him any more about the family history of CF.
 
Adaira is the youngest of 5 in a blended family. Our pediatrician ran the test 7 times. In that same appointment we were introduced to our CF team and we were told that we will be going to the doctors office a lot.
 
Adaira’s Cystic Fibrosis Mutations has 2 rare mutations 621+1G>T and 2585delT.
 
Currently there is no miracle drug or therapy out there for Adaira. Adaira is now 8 years old and in 2nd grade.
 
Adaira loves being part of her Girl Scout Troop where she sold over 500 boxes of Girl Scout Cookies while sick. Adaira also loves to go camping with her family.
 
Adaira’s special friend Sydnee, encourages Adaira to to take all her medications and treatments. Adaira would much rather play than do all her treatments.

Saving Bridget

 

Sierra has Cystic Fibrosis. She is 12 years old and is on day 7 of her hospitalization due to a drop in lung functions. Sierra lives in Boise, Id. To make good use of her time, Sierra decided to make bracelets.  The hospital staff started to purchase them.   Sierra learned of our “Saving Bridget” campaign. 14 year old Bridget Mallo from Butte, MT is going to Houston Children’s Hospital for an initial evaluation for a lung transplant on January 6, 2019 and returning on January 12, 2019.  Sierra has decided to sell her bracelets to help Bridget.  All funds raised through the purchase of her bracelets will be used for Bridget.  They come in all shapes and sizes, adult/child, and you choose your color. They are $5.00 plus $1.00 for shipping.

Place your order and help Bridget.  Click the donate button on our web page and be sure to type in message, Sierra’s bracelets. Your size, and your color.

Sierra is an amazing young gal who wants to be a part of doing something good.  She says, ” We need to help each other, as a teen we don’t get the Normal Life”.

If you don’t want a necklace, you can still donate to our “Saving Bridget” campaign.

From Idaho to Montana, Sierra says, “you are not alone, Bridget.”

.