Filtering by Tag: sing

Breath of Heaven - Collaboration of Katie Malik & Ashley Ballou-Bonnema

We are all constantly in search of that in which connects us to one another. We seek out commonalities, passions, and purpose that may lead us into being a part of something greater than ourselves. It’s in that great search for meaning and understanding that we realize we are simply seeking out the simple hope of not feeling alone. We are seeking out a place we wholly belong.
 

When I met Katie for the first time, I have to admit, my stomach was consumed with butterflies. It was the classic first meeting jitters and it was via Skype. Why was I so nervous and anxious? Well, because there are very few people in the world that have the capacity to truly understood what it is like to really walk in my shoes. Or, even more so, sing with these lungs. You see, Katie and I are both singers. We connected over our love for singing classical music, performing on a stage, our travels, and unquenchable thirst for adventure. But there was something that connected us at an even deeper level than all of that. It was something that we both knew should logically make it impossible to be a singer. A disease called cystic fibrosis. It also is a disease that would never allow us to sing in the same opera house, performance hall, or living room because of the potential danger we post to one another due to infection control.


But, I knew if anyone truly understood what it is like to really feel yourself take in air and thoughtfully set it back upon your breath in the form of a song, it would be Katie. And she wouldn’t just understand this, but against all odds, she too, would live for it. It was a fast friendship rooted in things we had experienced simultaneously but in different life journeys. We both credit our love of singing to keeping us healthy and our lungs challenged. Singing feeds our soul while combating the silent effects of CF hidden within our bodies.
 

As singers there is little to nothing we love more than making music with others. There’s a feeling of electricity that shoots through your body and enlivens every cell when you suddenly find synchronicity with another’s voice. It’s life-giving. Katie and I had talked about what it would be like to sing together and how truly glorious that would be. But, cystic fibrosis makes that an impossible dream.


Or, is it?

Katie and I set out to make music together. We are singers first and foremost, and we just happen to have cystic fibrosis. We may not be able to make music in person, but we can still use our voices to make memorable and meaningful music together. And we did.

With 1,500 miles between us we created this meaningful duet. This experience of putting together a song from Washington and South Dakota had its challenges. But, Katie and I live with cystic fibrosis every day of our lives, and that in-and-of-itself has taught us we are capable of doing anything. This passion project has taught us that we are not alone in our journeys. It has taught us that together we can create something bigger than ourselves. It has illuminated our passion and given our voices a collective resonance - one that shows even with cystic fibrosis we will make life-giving music together.

May this project fill your hearts with the reminder that you’re never alone and the belief that anything is possible.

Learn more about Katie Malik at katiemalik.com

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE - A Night of Song

August was a pretty memorable month for Breathe Bravely - filled with meaningful milestones and events that only could be possible through the generous support and incredible work done by those who help make up this organization. Here's a glimpse into one of memorable nights:

On Tuesday, August 15, 2017 the instructors of sINgSPIRE came together to not only share a memorable night of music, but they also shared their own experiences being a part of sINgSPIRE. Those present that night were able to become a part of sINgSPIRE and be fully immersed in the life-giving impact of the program. Audience members were given a glimpse into the sINgSPIRE program, what it is all about, and the amazing progress of some of its students. Instructors shared moving personal accounts of the incredible progress and life-changing impact this program has had on both their students and on them as teachers. sINgSPIRE is giving voice to cystic fibrosis in so many different and life-changing ways. 

Here's a glimpse into some of the incredible music of the evening provided by our sINgSPIRE instructors: 

As we wrap up our second session of sINgSPIRE, we gratefully reflect on this incredible opportunity we've been able to see come to life through such passionate instructors and engaging students. sINgSPIRE has been more impactful than we could have ever dreamed and we are truly thankful for the support of the Cystic Fibrosis Foundation and each of you who has generously supported this vision and helped give it such incredible life. 


A very special thank you to everyone who helped make "sINgSPIRE - A Night of Song" come together into a beautiful and unforgettable evening. Thank you to First Congregational Church in Sioux Falls, SD for hosting this memorable night of song and graciously supporting our mission. 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE : A Meeting to Remember

Session II of sINgSPIRE is underway with fresh new students and several continuing on from the first session! It's an incredible group of participants and we are so excited to see the amazing progress as students take part in their weekly lessons with their assigned sINgSPIRE instructor. 
 

Zoom, Zoom.

All lessons a part of sINgSPIRE thus far have been done via a platform we use called, "Zoom." It is a video-call service that allows us to see and hear each other with minimal delay and good sound quality. This platform allows sINgSPIRE's participants with CF to take part in the program from all over the United States as our instructors are based out of Sioux Falls, SD. This platform also allows participants with CF to remain in their comfortable environment and do lessons from the comfort of their own home. What has been most amazing are the meaningful relationships between the students and their instructors that so easily have formed through a computer screen while actively taking part in learning the art of singing. 

The Meaningful Meeting

Because our sINgSPIRE students are from all over the country, that makes it difficult for the student and instructor ever to meet face-to-face in the same location. But, this past weekend, our sINgSPIRE instructor, Maren, was traveling for a wedding to the location of one of her current sINgSPIRE students. And a pretty cool thing happened - they got to meet face-to-face and sing together in the same location. I am positive it is a day they both will remember always. 

What we get to share by being a part of sINgSPIRE is pretty amazing and we feel pretty lucky to share this life-changing experience with our participants. We are certain sINgSPIRE's impact will have lasting effects on everyone who is connected to it: student, instructor, supporter, you.  

Don't forget, if you or your child is interested in being a part of sINgSPIRE please sign up via our sINgSPIRE enrollment page. 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Breathe Bravely Backyard Bash

It happens once a year. After a morning of walking to support the Cystic Fibrosis Foundation and their tireless endeavor to finding life-extending therapies and cure for those living with CF, our backyard is transformed into a gathering place for a night of celebrating Breathe Bravely. A night celebrating each of you that has helped give life and breath to this organization and made it sing.

This night was something truly special. The energy in the backyard was contagious to anyone who walked through its gates. It was an atmosphere that enveloped you in pure happiness: live music from beneath the pergola, awesome pizza, amazing friends, and a simple cause that was alive in every person present. From beneath the giant tent and backyard you could hear laughter from all the kids, the crash of giant Jenga blocks, and an abundance of joy. Most of all, there was an unmistakeable hum of excited conversation - dialogue that buzzed around the incredible milestones achieved by Breathe Bravely this past year. 

BRAVE BUNDLES:
In the last year, Breathe Bravely has sent out 20 Brave Bundles to individuals across the United States in need of an extra boost of bravery and support during a difficult time. Find out more about our Brave Bundles and send us a message with the name of someone you know that might be in need of a Bundle: Brave Bundles.

IMPACT:
This year, Breathe Bravely was awarded an incredible opportunity. Our organization was the recipient of the Cystic Fibrosis Foundation Impact Grant - a grant allowing Breathe Bravely to see its dreams of sINgSPIRE take shape and come to life.

sINgSPIRE:
In February of 2017, Breathe Bravely's sINgSPIRE program was underway. The first 5 students had a successful and meaningful 10 weeks with their assigned sINgSPIRE voice instructor - together combatting cystic fibrosis through the art of singing. This week, 5 new sINgSPIRE students will be assigned to one of our brilliant sINgSPIRE instructors and the next session will be underway! We are off to an amazing start with this Breathe Bravely original program and it couldn't have been possible without you and your fervent support! Learn more about our program and submit an application today.

GIVING VOICE
Over the last year, Breathe Bravely has had the amazing opportunity to use its voice - creating meaningful dialogue and building a community among those impacted by cystic fibrosis. Most importantly, we have continued to simply find and share the beauty that lives within every breath we each are given. 

None of this would have been possible or continue to be possible without each of you, your unwavering support, and belief in our mission. Thank you for being right next to us every breath of the way. It's amazing what can happen in a year, and we are just getting started. 

If you'd like to learn more about Breathe Bravely, donate to our mission, or send us a message please explore our website!

 

 - THANK YOU - 

A huge thank you to Jordan & Stacey at Big Top Tent Rentals for their heartfelt generosity. Thank you for taking such good care of us, keeping us cool, and helping us transform our backyard into some place truly unforgettable for the Breathe Bravely Backyard Bash.

As always, the music made the evening and it couldn't have been more meaningful. Thank you to dear friends of mine and advocates of Breathe Bravely, Martha & Mr. Stai. What you both shared that evening was absolutely priceless and so meaningful. Thank you!

One of my favorite elements of the evening, of course, was the food. Not only was the food delicious and so fun to partake in, but the people who made it are what made it so special. The wood-fired pizza and the genuine kindness shown by Kyle & Nicky at Skipping Stone Mobile Wood Fired Pizza is something that helped make the celebration so memorable. 

Speaking of food, we cannot forget what has become the signature dessert of our event: the Red Velvet Cake made by Darla. Not only is it delicious but it's made with the most genuine of love, making it all the more unforgettable.

Most of all, however, thank you to everyone who came out and celebrated with Breathe Bravely and to each of you whom so passionately support us. We are so very grateful for each of you and your generosity. I hope this year's Breathe Bravely Backyard Bash was a fun and special night for each of you! Here's to an incredible year ahead.

 

Truly grateful,

Ashley

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Sing Bravely : Karaoke for CF

On Thursday, March 9 an amazing group of people came together - both steadfast supporters who have been on this Breathe Bravely journey with us from its very beginning and new friends who for the first time, heard about Breathe Bravely's dear and personal vision of giving voice to CF through sINgSPIRE.

"Sing Bravely" was a fantastic night celebrating our sINgSPIRE program - a 10 week program that combats the effects of CF through the art of singing. Students are paired with a sINgSPIRE voice instructor and take part in individual voice lessons either in-studio or via video-call. Our first sINgSPIRE session is halfway through and the excitement for the next session is incredible!

Thank you to everyone who made our night at "Sing Bravely : Karaoke for CF" so memorable and who has joined us on this unforgettable and impactful journey. 

If you weren't able to make the event but would still like to donate towards our sINgSPIRE program, DONATE HERE! I  

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE : Good Vibrations

If you look closely at any great thing in life, you'll always see that it is comprised of people who see exciting possibility within the impossible - together making the most incredible impact.

To come together and be in the presence of these brilliant women is absolutely inspiring. Last night, our incredible sINgSPIRE instructors came together - sharing experiences of the last couple of weeks working with our amazing students in the program. The key is not only teaching the art of singing but linking it to living a life with CF as well. Most people don't know what it feels like to do a VEST treatment and how much pressure it puts on our chest. A year or so ago, my husband, Mark, brought to my attention that I hum or sing while doing my treatments. I didn't even realize I was doing it. Mark calls it "chirping." After realizing that I do it, I became more conscious of it and started really thoughtfully utilizing it while doing my VEST. Why do I do it? I do it because it helps relax my breath and streamline my inhalation and exhalation. I also think it helps vibrate my chest even more.

So, what did we do at our meeting last night? Some of the instructors strapped on my VEST and first-hand felt what it's like to be vigorously shaken. More importantly, they felt how the art of singing can impact our students even more. I am grateful beyond words for each of them.

Written by Ashley Ballou-Bonnema

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE : CF Foundation Impact Grant

We are so grateful to everyone who has supported the dream and vision of sINgSPIRE and helped to make this program a reality. We are also excited to have the support of the Cystic Fibrosis Foundation and the great honor of being one of their recipients of the Impact Grant.

What is the Impact Grant?


"...Cystic Fibrosis Foundation Impact Grants, a program that provides up to $10,000 per year to individuals or organizations that benefit the cystic fibrosis community.

Ultimately, seven exceptional applicants received grants, from programs devoted to helping people with CF achieve their personal fitness goals, to supporting and educating CF spouses and caregivers. As a person with CF, I was particularly excited to see such dynamic proposals, and I look forward to continuing to grow the Impact Grant program in the years to come. It is therefore with great pleasure that I announce the 2016 Impact Grant awardees. The Foundation is proud to support these organizations in their important missions to benefit our community." - Piper Beatty Welsh, www. cff.org

 

The CF community is filled with passionate individuals striving to make a difference in all they do. Take a look at the official announcement and the other amazing awardees!

Meet the Seven Impact Grant Winners -

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE : Enrolling

It was a big day for Breathe Bravely on Monday, January 9. sINgSPIRE was officially launched - opening enrollment to five new students!

What is sINgSPIRE?
 sINgSPIRe is a 10 week program created specifically for people with CF. It focuses on combatting cystic fibrosis through the art of singing. Enrolled students will be paired with a professional voice instructor and will take part in 10 weeks of individual voice lessons that take place either In-Studio (where available) or via Video-Call. sINgSPIRE instructors will thoughtfully guide each unique student through the sINgSPIRE program that was created for children 5+, teens, and adults with CF. 

Learn more about the sINgSPIRE program and be a part of this life giving program. 

The Driving Force Behind sINgSPIRE
siNgSPIRE was inspired by the powerful impact singing had on our founder Ashley's life with CF. She has realized the significant impact singing has had on her health both physically and mentally and it continues to be a vital part of her health routine. In a previous post she shared her passion for singing and the immense impact it has on her life with CF. Read "A Song For CF" to learn her story and the inspiration for sINgSPIRE.

Enroll Today
It is a great honor to launch this program as a part of Breathe Bravely. Give voice to the song that lives within you and be a part sINgSPIRE! Enroll today to be a part of our next session! Spots are limited to sign up now!

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

sINgSPIRE : A Song for CF

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories

My name is Ashley Ballou-Bonnema and this is my song for CF: 

"The art of singing – it has been woven within every breath of my life for as long as I can remember. As a small child it wasn’t Bugs Bunny I watched in the morning but countless music videos on the original MTV. In those early days I would have never known just how much a love of singing and music would impact my life. How much it would give me life – literally.

Through my years growing up some incredibly inspiring and impactful people came into my life – instilling and cultivating the song that lived within my soul. Music became the very thing I could escape to when the unfairness of life whirled recklessly around me. I remember as a teenager being invigorated by the breath that would pass through my lips filling my lungs and then transforming that very breath into song. I followed that song to college where I studied vocal music and then onto graduate school for a Masters degree in voice. I sang - even when I was told it wasn’t possible. I sang – even when I thought it wasn't possible. I sang – always trusting the song that lived within me and knowing it was all part of something greater than myself.

Today I am a professional musician with a private studio of over 25 voice students. Little did I know all those years ago standing in front of a giant TV screen singing along with MTV just how much that love of singing would give me life. It’s only now after 20+ years and some difficult days that I am I finally able to see the impact of singing on my life and why exactly it’s something I’ve relentlessly clung to. It’s because my life has depended on it.


How does singing help me live my best life with CF?

Work. Work. Work.
My classical training challenges my respiratory system while also strengthening it. For me, I have found singing to be one of the most beneficial ways of airways clearance next to VEST treatments. 

Here’s a glimpse into my morning warm ups with Kalvin. It’s important for me to get the air moving through my lungs and my body breathing deeply. After a nights sleep my lungs are tight and achy. A good morning warm up is filled with lots of exercises that sound like sirens, sighs, and scales - usually lasting a good 20-30 minutes.  

Breathing Deeply.
Singing has taught me how to breathe deeply, and how to use the air I am given most efficiently. Focusing on deep breathing also lends itself to strengthening my core breathing muscles – helping me breathe better, cough better, and have a stronger core. Breathing deeply not only helps me with singing a phrase of music but it also helps combat anxiety I have related to CF.

Looking Within.
Singing and being aware of my breath has instilled a great self-awareness of my respiratory system. It has allowed me to truly connect with my breath and in turn made me very aware of the slightest difference in how my respiratory system is working. This awareness allows me to notice any changes in my respiratory system - hinting at the start of an exacerbation or infection, sometimes even before I experience any other telling symptoms.

Being Happy.
In singing I have found something that not only challenges myself mentally and physically but also fills me with great happiness. There is truly no greater feeling than feeling that air pass through my lips and exchanging it for a song. It’s my definition of happy.

I never could have imagined all those years ago as a young child, teenager, and even college student just how impactful singing would be in my life. I never could have imagined just how life-giving it would be. In conjunction with my regular daily medications and therapies singing has helped to keep me alive. It is my greatest hope to share that very love and the impact of singing with others affected by CF. Maybe it could change their life the way it has changed mine. This is my inspiration and passion for Breathe Bravely's sINgSPIRE."

 

To find out more about sINgSPIRE please check out the sINgSPIRE tab on our website: Breathe Bravely.

 

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.