Rare Leader: Michele Erwin, President and Founder of All Wheels Up

The Basics
Name: Michele Erwin

Title: President and founder

Organization:  All Wheels Up

Focus:  We are focused on the funding and research of a wheelchair spot on commercial airlines akin to what is available on a bus or train today. Today, someone can take a wheelchair on a jetway to the airplane door and then they are lifted by two people and carried and placed a seat, or what is called an aisle chair, which closely resembles a package dolly. The wheel chair community calls that the Hannibal Lecter chair because it is so small, and your arms and legs are usually strapped into it.

Headquarters: Frisco, Texas

How did you become involved in rare disease: We are more than a rare disease organization because we are focused on anyone in a wheelchair. My son has spinal muscular atrophy, which is a rare disease.  He uses a wheelchair. He is basically paralyzed and immobile. When he was younger, and he used a smaller wheelchair, it became clear that travelling would become impossible due to how difficult it was when he was small and lightweight. I could not imagine what this would be like for someone who was an adult and didn’t have help, and just how unsafe it is in general for someone with complete immobility.

Previous career: I was a sourcing business manager for fashion companies and still do that today.

Education: Associate’s degree in fashion buying and merchandising and a bachelor’s degree in textiles production management from the Fashion Institute of Technology

Funding strategy: We are funded through private donors,  grant writing, and in-kind donations from key stakeholders, such as wheelchair securement systems that we are testing at an Federal Aviation Administration testing facility.

What’s changing at your organization in the next year: We are starting to work with a consultant who is going to be our development director to help us with organizational sponsors.

Management Style
Management philosophy: We are an all-volunteer organization, so I’m pretty easy on everybody but myself. My expectation is “do what you can but do what you commit to doing.”

Guiding principles for running an effective organization: We just don’t ever give up.

Best way to keep your organization relevant: We post on social media almost daily. We let our followers know what we’re working on, if we’re invited to speak someplace, as well as posting news articles about accessible air travel just so we’re always present and top of mind.

Why people like working for you: I think because we have a unique opportunity to truly make change and our message is very positive. We are showing airlines that a wheelchair spot is possible and economical.

On the Job
What inspires you: What inspires me is every email or Facebook note that I get from the wheelchair users saying they are so happy about the work that we’re doing and that they hope we can bring about change in their lifetimes.

What makes you hopeful: Today, every U.S.-based airline is listening to our message. They are engaged and open-minded. That’s a huge step to making accessible air travel happen tomorrow.

Best organization decision: To spend my own personal money to fly to the United Kingdom for the first symposium on wheelchairs for in-cabin use hosted by Flying Disabled and Virgin Atlantic. I was invited as a speaker. That presentation really catapulted our work. We are now working with major airplane manufactures, airlines, and major stakeholders. It was the best decision for us.

Hardest lesson learned: Do not share your ideas with anyone outside the organization who has not signed a non-disclosure agreement.

Toughest organization decision: To prioritize funding.

Biggest missed opportunity: Thinking that a working group session with the airlines would cost a lot of money. If I knew it would not cost a lot of money, I would have had one sooner.

Like best about the job: Presenting our feasibility study. Showing people that wheelchair securement systems passed FAA testing and seeing just how people are fascinated with our results.

Like least about the job: What I like least is lack of funding.

Pet peeve: My pet peeve is people who say they are going to commit to something and they don’t.

First choice for a new career: This my second career. This is what I wish to do full time.

Personal Taste
Most influential book: I’d say Rise Above: How One Man’s Search for Mobility Helped the World Get Moving by Ralph Braun. He was the inventor of the wheelchair accessible van.

Favorite movie: Grease

Favorite music: I’m more a talk radio kind of girl.

Favorite food: Japanese

Guilty pleasure: Potato chips

Favorite way to spend free time: My favorite way to spend free time is playing tennis and hanging out with friends and family.

August 9, 2018