RARE Daily

Rare Leader: Caleigh Haber-Takayama, CEO, Fight2Breathe

May 14, 2020

The Basics
Name: Caleigh Haber-Takayama

: Founder, CEO, and Chronic Badass

Organization: Fight2Breathe

Social Media Links:

Social Media :

Disease focus: Cystic fibrosis is a rare, genetic disease that causes mucus to build up in the lungs, pancreas, and other organs. The condition can make breathing difficult and cause inflammation and infections, chronic coughing, and wheezing. The disease causes permanent damage to the lung and the formation of scar tissue and cysts.

Headquarters: Culver City, California

How did you become involved in rare disease: I was diagnosed with cystic fibrosis at birth. I have been very fortunate that my family has supported me and guided me in maintaining self- confidence despite having different responsibilities in life. My mom and dad introduced me to many different successful foundations throughout my childhood and early adult life. They taught me the value in being involved within close communities and the importance of working together to achieve a common goal. 

Previous career: Pastry chef

Education: Degree in patisserie and baking, California Culinary Academy, Le Cordon Bleu 

The Organization
Organization mandate: I created Fight2Breathe to provide a fully transparent view into life with cystic fibrosis, chronic illness, genetic disease and organ transplantation, fund innovative research, and support those impacted by the fight.

Organization strategy: We are an organization with limited resources. Each choice we make has tremendous effect on our future. The strategy behind Fight2Breathe has been to support and empower individuals like myself, who live every day with disease. We aid in coping with the obstacles the disease presents to people with cystic fibrosis and their families, and to catapult medicine and science forward in any way possible.

Funding strategy: Our funding strategy has and will always align with the mission of Fight2Breathe. Most of our funding is through private donations, fundraisers, partnerships with other foundations, as well as through merchandise sales. Our main focuses are programs like our Big Cysta, Big Fibros mentorship, featured fighter program happy mail, and care packages we bring to fighters, who are inpatients for extended periods of time. 

What’s changing at my organization in the new year: As my health continues to improve I hope to collaborate more with other like-minded organizations, as well as join forces with large and small foundations that focus on improving the quality of life for people living with disease. I also hope to do more speaking engagements to help people understand living with disease and caring for someone with disease. 

Management style: I strongly feel management should provide an environment leading to productive outcomes by giving examples of guidance and leadership.

Management philosophy: My title may be CEO and founder, but my focus is to lead by example by turning hardships into moments of inspiration and to give as much support as I can to others. 

Guiding principles for running an effective organization: No activity is ever made without considering how it will make others feel and what it will do to inspire others within their own lives. Also, to only work with companies that align with Fight2Breathe’s mandate. 

Best way to keep your organization relevant: To be open and honest in sharing my own life and disease journey. To stay active within my disease focused communities and always express extreme vulnerability as a way to lead others in feeling empowered to be truthful and comfortable as well. 

Why people like working with you: I believe that working together can provide a better outcome than working alone. When other foundations work with me I keep an open mind to embracing their ideas, as well prepare myself to bring equally valuable concepts. 

Mentor: I have many different mentors in life. Each one provides a different perspective on different parts of my life. In everyday life as well as my medical journey my mentors are the individuals who know me to my core. And often they are people who are going through the same experiences one step in front of me. 

On the job
What inspires you: My community because I walk in their shoes every day and I feel their pain and vulnerability as well as their victories. 

What makes you hopeful: “All good things start with a dream. The dream becomes a vision. The vision becomes a plan. The plan becomes a reality.” Fight2Breathe was a dream started when I was 21 years old and today continues to grow into the reality of what it will be at its fullest potential. 

Best organization decision: When I began Fight2Breathe the focus was on fundraising for my transplant. Once I reached that goal, the focus shifted away from me to focus on others. 

Hardest lesson learned: Managing deadlines while fighting my disease and living in and out of the hospital. 

Biggest missed opportunity: Not completing the 501c3 on time. 

Like best about the job: It has given me a purpose. Otherwise, I may have felt less motivated at times. 

Like least about the job: Having the sole responsibility in achieving what is needed. 

Pet peeve: When people say that I was born with a positive attitude and don’t understand that positivity and success in my journey wasn’t accomplished without hard work. 

First choice for a new career: A reconstructive surgeon for birth defects, traumas, or other medical necessities. 

Personal taste
Most influential book: I am currently reading When Death becomes Life: Notes from a Transplant Surgeon by Joshua D. Mezrich. It has been eye opening into the way choices are made by healthcare teams, their emotional mind sets, and how to advocate for myself in medical situations. 

Favorite movie: I am a huge moviegoer. This year I was part of the Regal Cinemas membership and attended more movies than I can count on both hands. It’s hard to pinpoint a favorite movie or even favorite genre, but I lean toward easy going, fun, and engaging entertainment. 

Favorite music: My brother has always been my musical influence. He is very into R&B, rap, hip-hop, and Motown, so naturally I’ve always leaned toward those genres and pop. Basically, I tend to gravitate toward whatever is on the top charts. However, since marrying, I’ve opened my mind up to country and less mainstream music as well. 

Favorite food: Asian inspired anything salty or sweet

Guilty pleasure: Self-care: getting my nails done and a good massage

Favorite way to spend my free time: My favorite way to spend free time is with my husband and my family, traveling, and eating good food. Also learning anything new. I’ve picked up a lot of hobbies during my first year of good health. 

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