Rare Leader: Jon Miller, President of NOTA

October 25, 2018

The Basics
Name: Jon Miller

: President

Organization: N.O.T.A. – The Network of Tyrosinemia Advocates

Disease focus: Tyrosinemia is a genetic disorder characterized by elevated blood levels of the amino acid tyrosine, a building block of most proteins. Tyrosinemia is caused by a deficiency of one of the enzymes required for the multistep process that breaks down tyrosine. If untreated, tyrosine and its byproducts build up in tissues and organs, which leads to serious medical problems.

Headquarters: Tuckerton, New Jersey

How did you become involved in rare disease: I was told my child was going to die. That was it for me. They said he has tyrosinemia and that was the beginning of it. In my opinion, advocacy is treatment for post-traumatic stress disorder and I use my advocacy to act as a therapy for the trauma my family endured.

Previous career: I used to be a professional musician. I was a guitar player in a professional rock band called Shorty Long and the Jersey Horns. I currently own and operate an auto repair facility in Tuckerton, New Jersey–Jon Miller Car Care Center.

Education: B.S. in business management from Stockton University; ASE certified master technician from the National Institute of Automotive Service Excellence with advanced level certification as electric and hybrid vehicle specialist, and engine performance

The Organization
Organization’s mandate: Ensure no child or individual around the globe goes untreated. See that parents are not alone in this struggle and that they have the support they need at all times. Enhance newborn screening–never miss a child’s diagnosis again.

Organization’s strategy: We say, “Together we are strong.” There is strength in numbers and unity. We make sure our members reach out to fix the system. Also, we have a big family weekend that we do at the Victory Junction Gang Camp in North Carolina.

Funding strategy: We accept donations through sponsorships for various events. We accept private donations from people. Some people will hold fundraisers. One woman asked her wedding party not to give gifts, but donate to NOTA.

What’s changing at your organization in the next year: NOTA’s been a small organization in its headquarters. I’ve been doing 90 percent of the work. Next year, we are expanding our board to seven members from three and we are bringing in some other parents who have been involved in key roles and bring individual talents. I’m going to delegate more. That’s a big change.

Management Style
Management philosophy: I try to surround myself with incredibly smart people in areas that I’m weak in. I just make sure everyone on my team brings expertise that I don’t possess to the table, and I respect them for that. That’s what makes me stronger as a leader.

Guiding principles for running an effective organization: I don’t micromanage. I try to give people tasks and let them do their jobs.

Best way to keep your organization relevant: By giving members a sense of empowerment over the disease.

Why people like working with you: I keep it real. I don’t put on airs for anybody. When I look you in the eye, you know I’m genuine and I expect the same from everyone. I don’t sugarcoat anything, and I treat people with respect.

Mentor: My father is my mentor. When I was very young, my father made me independent to a flaw. He gave me the power to make a decision and let me experience the consequences, whether they be good consequences or bad consequences. He taught me my morals and values. There have been many people who have come and gone, but he was the one who just believes in me. He taught me the value in listening to everyone’s opinion and formulating your own opinion based off the information you got from all of the other people, but not blindly accepting someone else’s position as your own.

On the Job
What inspires you: I keep photos and the memories of the children that we have lost through missed diagnosis of newborn screening. I keep pictures of them and I keep them in my hearts. I fight for them.

What makes you hopeful: Gene therapy, and the thought that future generations will have better treatment options.

Best organization decision: Making the organization.

Hardest lesson learned: I lost a child one time because I was not able to act fast enough to get him medicine. He was in a third world country. No matter how hard you think you are working, and no matter fast you are working, you can always work a little faster and a little harder. It’s the only child I’ve ever lost.

Toughest organization decision: Getting rid of toxic people.

Biggest missed opportunity: I live my whole life by not missing opportunities. That’s my mantra.

Like best about the job: Travelling

Like least about the job: I can’t change the world by myself.

Pet peeve: I have great relationships with industry players. However, sometimes they can be pushy and try to get me to endorse certain products, or push my members to switch to their brand. I refuse to compromise my principles. I don’t like being bullied by industry.

First choice for a new career: Entrepreneur and real estate developer.

Personal Taste
Most influential book: The Celestine Prophecy by James Redfield

Favorite movie: Back to the Future

Favorite music: ‘80s or ‘90s alternative

Favorite food: Vegetarian Chinese food

Guilty pleasure: Buying and selling classic cars

Favorite way to spend free time: Riding my Harley Davidson with my son


October 20, 2018

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