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.”

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Meet Bethany and Willow!

Our Featured mother for the month of November is Bethany Sweet and her beautiful daughter, Willow. Willow is 11 years old. She was diagnosed with cystic fibrosis at 2 weeks old. She loves animals. “We have 1 dog, 2 cats, and 2 bunnies”. Willow does very well in school and loves to travel. Her favorite vacation was Africa.

She has 2 younger brothers Gabriel, 8, and Jeremiah, 5. She also is a musician and plays piano and violin.

Bethany attended our 2018 “We Walk Together” Mothers Retreat. Salute to this most awesome mom.

 

Saving Bridget

Bridget has cystic fibrosis.  A progressive and genetic disease that causes persistent lung infections and limits the ability to breathe over time. Bridget is 14 years old.  She is very sick.  Her lungs functions are in the  40 percentile range, and often drops to the 30 percentile.

What does this mean? Its time for a double lung transplant evaluation! When the call came in from Houston Texas Childrens Hospital to this Butte, MT family a new beginning was to start.. The time has come for Bridget to undergo an evaluation.  She must prepare herself for this new journey in her life.  She must prepare herself mentally and physically. The wait for new lungs could be a long time, and in the meatime, preparations of the unknown enter into her life.

Travel to Texas Childrens Hospital will take its toll financially for this family.   We can not let this family down.  They need our help to get them to Texas and the ongoing support that is needed.

We need you!  We ask that you donate to Bridgets flight of hope, to let her know that you care, that she is not alone in this walk of cystic fibrosis.  CDBF strives to assists our families to help reduce the financial burden of this disease.

Please help us help Bridget.   We ask that you donate to Saving Bridget Campaign.  You can donate on line at www.breathinisbelievin.org or send a check to The Cody Dieruf Benefit Foundation P O Box 6044 Bozeman, MT  59771

PS:  Please Help Us Help Bridget

Vertex grants $5000 to Mothers Retreat

Vertex Pharmaceuticals believes in our Mothers Retreat. They granted us $5,000.00 to help bring mothers of cystic fibrosis children to our retreat held at the 320 ranch in Big Sky Montana. Vertex believes in the CF community and wants to help those that live with cystic fibrosis. From Montana to Vertex headquartered in Boston, CDBF thanks you for believing in us.

Cystic Fibrosis Foundation Awards Grants to Eight Community Programs

A $10,000 grant was awarded to The Cody Dieruf Benefit Foundation for its program We Walk Together Mothers Retreat.  A retreat for mothers of Cystic Fibrosis children. We are touched and honored by this CFF Impact grant award.  CDBF feels it is an important aspect of their foundation.  A way that we can continue to honor Cody Dieruf and all the mothers of cystic fibrosis children.  Our 2nd annual event was truly inspiring, emotional and brought a sense of freedom as the  mothers poured out their hearts regarding life with this disease of cystic fibrosis.  CFF Impact Award was our title sponsor for this event. We are grateful to know that CFF believes in our cause, and we will continue to strive to make this event an available each year to mothers.

 

The Cody Dieruf Benefit Foundation offers a three-day We Walk Together Mother’s Retreat for the mothers of children with CF, providing them with valuable education, self-care, and mutual support. The retreat aims to improve the wellbeing of mothers and in turn, improve the health and happiness of their entire families.

 

Meet Sweet Martha Modawell – From Boise Idaho


 

Martha Modawell RYT 200
Martha is the mother of two daughters with Cystic Fibrosis.   She studied Yoga and Reiki at Yoga For Healthy Living LLC in Brighton MI, where she received her RYT 200 Sivananda Style Yoga. Martha brings her authenticity and love for Yoga to each class. Her classes are humorous and yet grounding; she helps her students to feel empowered and to develop a true connection with themselves.  Having found personal healing in yoga, Martha loves to teach from the heart and serve those around her with passion and love. At her former studio in Troy, MI., called Yoga For Healing, Martha worked with those overcoming addictions, PTSD, anxiety, depression, and trauma. Martha now lives with her family in Boise ID. She uses her innate ability to connect with people to create a comfortable relaxing and fun Yoga practice that empowers and enriches her students.
The Cody Dieruf Benefit Foundation welcomes Martha to our 2018 annual Mothers Retreat.

 


CDBF welcomes Robin Modlin-Presenter for “We Walk Together”

Introducing beautiful Robin Modlin, MA

I am a mother of a Cystic Fibrosis child.  My daughter, Anna is 37 and had a double lung transplant 8 years ago. My life changed when she received this miracle. Having been actively involved with the Cystic Fibrosis Research Inc,(CFRI) community for so many years I wanted to give back by designing a CF mother’s retreat called Embrace. I am honored to also be included in The Cody Dieruf Benefit Foundation Mothers Retreat held in Montana, We Walk Together. It is my passion to see CF moms come together in community and learn to care for themselves.

I am also a mosaic artist and a SoulCollage® facilitator. I believe we can create beauty and art out of our most difficult times. With an inward eye and creative bent I enjoy sharing collage and other participatory projects with others for personal healing. 

Life has been very generous to me. I also have a beautiful daughter, Sara who is now a physician and a wonderful husband, Doug. I am so grateful and I know that CF has shaped me and my entire family by teaching us so many valuable lessons of love and compassion. 

Thank you, Robin for being a part of our We Walk Together Mothers Retreat.