RARE Daily

Rare Leader: Barby Ingle, President, International Pain Foundation

November 12, 2020

The Basics

: Barby Ingle

Title: President

Organization: International Pain Foundation

Social Media Links:

Disease focus: I live with multiple rare disorders (migralepsy, hypothyroid, TMJD, reflex sympathetic dystrophy, dystonia, endometriosis, duplex kidney), PALB-2Var breast cancer, and most recently valley fever pneumonia.

Headquarters: San Tan Valley, Arizona

How did you become involved in rare disease? I developed a rare disease and had no idea this world existed until it happened to me in my 20s. Now I am 48 and have been living with rare diseases more than half my life. I had so much trouble being diagnosed that I decided to use my voice to help others get care faster by sharing resources, tips, and tools, as well as my story.

Previous career: I was the head cheerleading and dance coach at Washington State University and owned my own cheer/dance training company hosting competitions and summer camps in the United States and Canada.

Education: BSc in social psychology with a minor in dance from George Mason University

Organization Information
The Organization’s mandate: The International Pain Foundation (iPain) is devoted to advancing access and quality care in order to help people suffering from a variety of muscular-skeletal, inflammatory, neurological, emotional, degenerative, and often rare conditions that involve chronic pain through education, awareness, and access to care projects.

Organization’s strategy: The goal is to allow chronic patients the ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate support for its pain citizens. Through supporting education for patients, family members, caregivers, and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic rare pain conditions. This allows our foundation to affect the lives of the millions of people with chronic pain worldwide as well as chronic pain patients’ caregivers and family members, and healthcare professionals.

Funding strategy: We work to maintain a balanced funding among industry (pharma, naturopathy, durable medical equipment), patient/caregivers, public donors, and corporate donors (non-healthcare related). We also raise funds through our iGiveACare Run, Walk, Roll, and iPain Living Magazine, which is sold at newsstands in the United States and Canada, and digitally around the world. 

What’s changing at your organization in the next year: Every two years we go through a board of directors and officers voting. This occurs every other December and two-year appointments begin January 1.

Management Style
Management philosophy: Leaders should provide guidance, direction, leadership, and always set an example.

Guiding principles for running an effective organization: My guiding principles for effective organization include leading with a powerful opinion that comes from first-hand experiences. Good communication skills and being able to explain the fix through stories of real-life examples.  

Best way to keep your organization relevant: I work to keep iPain relevant by being authentic. Authentic doesn’t necessarily equal success but being inauthentic is not successful. I lead by example. I have the nerve to be heard, which gives others the motivation to do the same.

Why people like working with you: People like working with me because I am a doer. If I say I am going to do this, I follow through. I find a way to accomplish what I have agreed to do.

Mentor: Most of my life my biggest mentor was my dad. He helped mold me into the woman I am today. His advice lives on in my head and heart. Lessons like try your best and dance everyday if only in your heart, I practice daily.

On the Job
What inspires you: A desire to do good things for the world. The joy of life, family, and friends.

What makes you hopeful: Trust that tomorrow will be a better day. I can’t remember a time in my life that I didn’t have hope.

Best organization decision: Involving a diverse population of patients, caregivers, providers and industry leaders on our projects has helped us create cohesive growing life-giving events, messaging, and resources.

Hardest lesson learned: Not everyone wants the help that I have to offer.

Toughest organization decision: The toughest decisions are when we want to expand with a new project or program. We want to do more but are held back sometimes due to limited resources.

Biggest missed opportunity: I can’t say I missed an opportunity, but I have taken all the ones I wanted. Not all were winners. I failed at some, but I can’t say I missed any.

Like best about the work you do: Well, I think people wouldn’t consider what I do a job as I volunteer my time and efforts, but I like best when I help someone and I know I have changed their life path in a positive direction.

Like least about the work you do: What I like least about leading iPain is the scam artists who prey on the vulnerable health communities. We have a guy who is sitting in federal prison now after scamming us out of $30,000. Another organization leader admitted to stealing $2.1 million. You know how many people I could have helped with that much money? It is a huge drawback when we are doing all we can, and others come in to make a quick dollar.

Pet peeve: People not counting my disabilities because they are typically invisible. “You look fine, why can’t you do that?”  

First choice for a new career: Go back to being a cheerleading coach. It is my passion and I continue to be a cheerleader mentally as much as I can.

Personal Taste
Most influential book: The Bible, because of my beliefs and desire to help others comes from my faith.

Favorite movie: Silly: Drop Dead Fred. Comedy: Dumb and Dumber

Favorite music
: Paula Abdul, Schroeder, Michael Jackson, and Prince—I am an 80’s girl, but I do like all kinds of music as long as I can dance to it.

Favorite food: Candy—all kinds of candy.

Guilty pleasure: Reality TV


Favorite way to spend free time: Watching TV, movies, and more with my husband and watching my husband do drone work.

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