Just Breathe and Run

02/28/2025

Did you know that today, Feb 28, is Rare Disease Day?!

There are approximately 7,000 different types of rare diseases. You're probably asking what makes a disease rare?! Well, that’s a good question... The answer is when a disease affects less than 200,000 people.

There are aprox 100,000 people world wide living with CF, so cystic fibrosis is considered a rare disease. CF really is a fascinating disease and what's even more interesting or what really makes us rare is how it affects us. There really are no two CF patients a like... we really are ALL one of a kind!

The most important thing I think anyone can do that is affected directly or indirectly by a rare disease is help raise awareness for it.

Research for rare diseases is almost always underfunded, and there are huge roadblocks in access to care. More than 50% of those affected by rare diseases are children. We need to start making these rare diseases known so that cures can be found for ALL of them.
Breathe out Love! Xo❤

01/27/2025

It's been a minute!

Share your JBR merch and/or awards you love and use in the comments below🤩💜

12/20/2024

Screaming happy birthday to the Co-Founder of JBR, Emily Poblano! 💜



📸: Full Gallop Photography

09/01/2024

Some things are in the making -

When you have a few minutes, we would seriously appreciate your feedback using the link below💜🌹

https://forms.gle/KmWBCggDpW61BHre8

“𝘎𝘪𝘷𝘪𝘯𝘨 𝘣𝘢𝘤𝘬 𝘪𝘴 𝘸𝘩𝘢𝘵 𝘨𝘪𝘷𝘦𝘴 𝘮𝘺 𝘭𝘪𝘧𝘦 𝘵𝘩𝘦 𝘮𝘰𝘴𝘵 𝘮𝘦𝘢𝘯𝘪𝘯𝘨." (Claire Wineland)

12/31/2023

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We dream of a day when every person with cystic fibrosis can live without the limitations of their disease. We will never settle for less than all people with CF living their healthiest lives possible. You can help us accelerate our progress in 2024.

Make your gift before midnight. https://give.cff.org/eoy5/donate?rbref=EOY2302&donate=100&unitid=California%20-%20Northern%20-%20San%20Francisco

04/29/2023

07/27/2022

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05/13/2022

May is awareness month and naturally I’ve been thinking of how much my life has changed in the last four years. It is easy to see the changes clinically - the changes in lab results, the avoided surgeries, the hospitalizations that never happened, it’s easy for me to document the freedom in my daily life; not having to pause for more therapy and more medication.

But I’ve been thinking even more about the changes that are harder to see. Harder to document. The changes in my heart. The changes in my spirit.

How do you document when a heart changes from fear and caution to freedom?

I turn 30 next month, an age my parents never thought I’d see. An age I wouldn’t let myself think beyond. And yes, I will joyously celebrate with a hope-filled heart, but my life has straddled both worlds. I will always know what came before and how it defined who I am today, so I won’t stop fighting until a cure is found for every CF mutation, when all of us can be filled with hope and feel free.

05/12/2022

So, is there a cure for CF?

❌ Currently, there is no cure for CF.
💊 Yet, specialized medical care, aggresive drug treatment and more can significantly lengthen and improve the quality of life.

👉 BEF continues to support cutting-edge research. Learn more in our website: https://www.esiason.org/what-is-cf/

03/05/2022