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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.

Clearly Invisible : CF Adventurers

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

The CF community is comprised of passionate and driven individuals that are dedicated to changing their community for the better. This community is made up of tenacious and caring people who have been diagnosed with CF themselves, family, friends, and individuals who have been touched in some way by CF. Brad Benson, the creator of CF Adventurers, is no exception. Learn about his passion project and how he's making an impact on the CF community. 

"I am the creator of the CF Adventurers website. (www.cfadventurers.org) I myself do not have cystic fibrosis. Cindy, a friend of mine since our days at the University of Rhode Island has a now 13-year-old daughter, Amanda, who has CF. I knew about the disease in its broad outlines prior to finding out about Amanda’s diagnosis, but committed to learn much more as a result of her situation. One thing that I had no awareness of was the fact that people with cystic fibrosis cannot be around each other in close proximity due to cross contamination concerns. This really struck me as poignant and something that would be particularly difficult to deal with. Even now, years after I learned about this aspect of CF life, I find it almost impossible to really understand. So I decided to try to do something about it. CF Adventurers is the result of that effort.


As I stated earlier, I do not have cystic fibrosis. I do, however, have a disability. I have spina bifida and use a wheelchair to get around. Not an ideal circumstance, perhaps, but who among us lives in ideal circumstances, free of difficulty. It is also useful to remember that one’s own issues and problems are not necessarily the toughest challenges people face I found, when I learned that people with cystic fibrosis cannot be around each other without risk to their health, that it made me consider my own situation. I feel no great need to be around other people with spina bifida. But I have the option if I want it, with no risk to me or others I might meet. People with CF do not have this option, and that fact must be hard to come to grips with. It is my hope that CF Adventurers can help bring members of the CF community together, in virtual space even if not in person."

Take a moment to check out CF Adventurers - "This website is meant to be a fun, safe place for people who have cystic fibrosis, their friends, family members, and others to gather. Here, people with CF can chat, experience online adventure, and share thoughts, feelings, hopes, dreams, plans, fears, and strategies... this site is intended to serve as an alternative way of meeting and interacting, even if not in person.  Life should be about options, and CF Adventurers is here to give people with cystic fibrosis the option of connecting online."

 

 

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.

Where it All Began : Fresh Paint

Who would have thought the two simple words "breathe" and "bravely" would come to represent what they do today. On April 1st, 2014 I took a deep breathe and bravely shared my first blog post.

Looking back it is all a bit surreal, and I can still feel the knot in my stomach and the shakiness in my fingers as I hit the "publish" button for the first time. For 60 days straight I blogged about my life with CF. I was open, honest, and real about the beauty and difficult realities my life held - seen and unseen. It's a decision that would impact my life more than I could ever fathom. Thank you to everyone who has been with me every step of the way through this incredible journey and continues to love me for all that I am. Love to you all.

Take a look back at where it all began those three years ago. (Click on the heading)

Breathe Bravely : Fresh Paint

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Today's post was written by Ashley Ballou-Bonnema.
To learn more about Ashley & Breathe Bravely as a non-profit organization click on the active links!! 

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.

Real 65 : Open Doors

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. 

The greatest of adventures lead you right to where your heart is happiest. A quick spontaneous trip lead to waking up to my favorite people this past weekend. That means some extra med time support - good thing I packed extra new tubing so everyone could get in on neb time. 

Thanks to Kendra for snapping this priceless photo!

Thanks to Kendra for snapping this priceless photo!

I always wonder what their little eyes see and minds think when they see me this way. My first instinct has always been to shut the door and hide myself away from everyone while doing treatments. But a part of sharing my honest life is keeping the door open and letting those I love see and experience with me this life with CF. 

To follow more of Ashley's personal account of living with CF check out her personal blog.

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.

Clearly Invisible : A Season of Difficult Decisions

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

It’s that special time of year when we come together to celebrate, sharing laughter, traditions, and memories with our family and friends. Our calendars are filled with holiday celebrations and time with those we love. This time of year holds so much joy and excitement. But for many with chronic illnesses like cystic fibrosis, this time of year can cause a lot of anxiety and disappointment, and it can be filled with heartbreaking decisions.

People with CF are fighting today for the hope of more tomorrows. Sometimes that fight includes making the difficult decision to not attend a holiday celebration due to the risk of compromising their health. You see, this time of year paired with a room bursting with loved ones can be a breeding ground for germs and sickness. Things like the air exchange in a room, how many people are sharing the same air, and what might be thought of as a simple cold or the sniffles can be detrimental to the health of someone with CF. An uncovered cough and the sharing of unwanted germs can lead to days and weeks spent in the hospital, hours of extra treatments, course upon course of potent antibiotics, and the possibility of fewer tomorrows. 

So, how can you help the person you love with CF during this beautiful and memorable season of celebrating? Show your support by:

  1. Letting the person with CF or their parents know if you or anyone attending the celebration have been sick. This includes the common cold or a little cough.
     
  2.  Reminding the person or the parents of the child who may have to make that difficult decision that they are not alone. It’s often easier to make an emotional and difficult decision if we know we have your support and understanding. 
     
  3. Washing your hands more often and covering your cough when your loved one with a compromised immune system (in this case your loved one with CF) is present.

There’s nothing quite like the heartbreak of having to make the decision to miss out on sharing these special days with the ones you love. Our hearts race with anxiety as we weigh the risks of exposure and have to make that difficult decision, mulling over the unfair realities of a life with CF and the perceived disappointment of those we love, if we cannot commit to attending a celebration. Speaking as someone with CF, more than anything we do not want to miss out on such a special time of making new memories or be vacant from the irreplaceable presence of love shared with our friends and family. But, we must be protective of every breath we are given - all in hopes of the chance to spend another holiday sharing in the beauty and love of the season.

 

 

 

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.

Clearly Invisible : Cross-infection and Community

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

324.5 million people live in the United States. The majority of us are seeking to find a community of people in which we belong - sharing similar experiences, thoughts, and friendships. These communities are bonded through deepest empathy - enduring similar journeys of struggle and triumph.

Just 30, 000 people in the United States live with cystic fibrosis. It’s an incredible community all its own, and like so many things that bring a community together CF is no exception. But, did you know it is recommended that people with CF have no physical contact or maintain at the very least a distance of six feet between each other? It is because of the possibility and risk of cross-infection.

Why is cross-infection so important? 
People with CF harbor certain germs and bacteria that can be extremely detrimental to the health of another person with CF. Bacteria and germs in people with CF can vary from person to person, making exposure to one another an important factor in limiting the introduction of new bacteria and germs that could have significant and irreversible effects.  

Isolation & Community
These guidelines have just recently come into practice over the last several years, as scientists and doctors learn more and more about CF. CF is an invisible disease to most people but what is even harder to see is the isolation it creates from the very community of people who truly understand and embody life with the disease. It’s a cruel and unapologetic part of the disease that thankfully has been lessened by today’s use of social media and Facetime – allowing deep friendships to form and a foundation for unprecedented empathy and support. We at Breathe Bravely feel extremely privileged to be a part of the CF community – a place where all who are impacted by the disease can come together and know they are never truly alone.

 

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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.

REAL 65 : Befriending a Butterfly with 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. 

It is a great privilege to introduce the first entry for Real 65 written by Paige Pearson Meyer. She is a dear friend of Ashley's and is an integral part of the nonprofit, Breathe Bravely. Learn how her life was touched by CF and what it is like to be a friend of someone living with CF. 

 

I remember where I was and the very first thing she said to me. With a smile like a brand-new Phillips bulb, lighting up her whole body, she bounded up to me and said, “Hi, I’m Ashley! And, I just think you’re fabulous on the news!” While flattered, her words were different. They weren’t hollow with recognition. I could feel she meant what she said.

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Three and a half years later, I’m honored to call Ashley Ballou-Bonnema my friend. I look back on our first meeting so fondly, and yet I couldn’t have imagined the richness our friendship would bring to my life. I didn’t know Ashley was living with Cystic Fibrosis. Quite honestly, I knew very little about CF and its vast effect. I didn’t know how it gets its pirate-like hooks into those with the disease, making it difficult to breathe and forming cysts on the pancreas. I didn’t know that so many people are carriers, nearly 1 in 31. I didn’t know about the unbelievable cost of trying to treat the disease. There was so much I didn’t know.

To my great fortune, Ashley was going through a metamorphosis when I met her. For years, she’d wrapped herself up in a tight cocoon, letting few people know about her life with CF. She found her wings by blogging about her experiences. Those blog posts helped open a dialogue between Ashley and me. Curious by nature, I quickly learned that my many questions would be met by self-deprecation. Ashley is quick as a whip, always inserting humor into conversation. She’s also extremely talented at deflecting, shifting the conversation back to something that’s going on in your life. But, I’ve learned that her humor and deflection are often veils to what’s really going on. I’ve learned that the many years of physically battling CF have been just as taxing mentally.

You see CF is devious. In one breath, Ashley’s beautiful soprano voice is clear and captivating. Her spirits are soaring as she shares her gift with the world. In the next breath, Ashley’s core is shaken, trying to fight off another life-threatening infection. Ashley often talks about the seasons and how CF has its seasons too. It’s so amazing to witness, but even on the days her body quakes from thunderous coughing spells, Ashley is grateful. She’s grateful for life. She’s grateful for her adoring husband, her supportive family, and her incredible friends. She’s grateful for the seasons.

Yes, I’ve learned about CF. My education includes things I wish didn’t know. But, what I’ve learned about my friend often causes me to shake my head and smile. Ashley is fearless and courageous. She’s warm and witty. She’s also the most grateful person I’ve ever met.

 

 

- About today's contributor - 


A journalist at heart, Paige Pearson Meyer is a wife, mother, and ardent supporter of Sioux Falls, South Dakota. Paige is also the Communications & Recruitment Manager at DocuTAP. Paige is blessed to serve on the Breathe Bravely board, helping to bring awareness to Cystic Fibrosis.

 

Learn more about Breathe Bravely's founder, Ashley, and her personal journey with Cystic Fibrosis - A Brave Beginning. 

 

 

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.