Rare Leader: Frank Rivera, CEO of Sarcoidosis of Long Island

The Basics
Name: Frank Rivera
Title: President
Organization: Sarcoidosis of Long Island
Disease focus: Sarcoidosis, an inflammatory disease that causes inflammatory cells to form clusters known as granulomas throughout the body affecting multiple systems.
Headquarters: Coram, New York
How did you become involved in rare disease: I was misdiagnosed in 2004 with lung cancer and went through four years of chemotherapy and radiation. When my breathing problem returned, I found out I had been misdiagnosed and that I actually had sarcoidosis. As I looked for information, I found there wasn’t much representation for the sarcoidosis community and I wanted raise awareness in the government.
Previous career: Owned my own construction business in Florida. When I moved back to New York, I was an office manager for a concrete company
Education: B.A. in finance and business management from Long Island University, South Hampton.

The Organization
Organization’s mandate: We raise awareness for sarcoidosis patients through government at the local, state, and federal levels. We also help patients find doctors and treatments.
Organization’s strategy: I spend a lot of time in Washington, D.C. My U.S. representative and both of my senators know me by my first name. I’ve gotten so close with my government officials that my U.S. representative set up a rare disease day for us at Stony Brook Hospital.
Funding strategy: I organize an annual walk in April, which is sarcoidosis awareness month. I also get local restaurants and other businesses to sponsor us, but we work through the national organization and our funding needs are limited. The national organization raises money for research funding.
What’s changing at your organization in the next year: I’m starting a new project called “Mentally Arare.” We’re getting funding to help the rare disease community to get affordable mental counseling. It’s going to hopefully kick off in May. It will be a new 501 (C)(3). I’ve got 12,000 counselors across the United States to commit to charge $10 an hour for the project. This is for the whole rare disease community, not just for sarcoidosis patients.

Management Style
Management philosophy: Focus on the patient. It’s not about me. It’s not about one person. It’s about the patient. Do what’s right for the patient. How can I help the patients?

Guiding principles for running an effective organization: It can’t be self-centered. It must be for everyone, otherwise you lose focus. That’s what you are here for as a patient organization. There are 200,000 sarcoidosis patients. I always consider myself a representative for those 200,000 patients and I always think about what they need.

Best way to keep your organization relevant: I do a lot of hands on stuff. I am good one-on-one. I do little crazy things. Purple is our color and I’ll always wear purple to a tv show, or wear one of our shirts. I’m big on social media and let people know where I am, and how I’m trying to help them so they know they are not alone. I’m making the presence of sarcoidosis know. It’s the number one disease for 9-11 first responders. I let people know that.
Why people like working for you: They know I’m genuine and they know it’s not about me.
Mentor: Andrea Timmons. She was a sarcoidosis patient. She was the first patient to reach out to talk to me when I was first diagnosed. Even though she was really sick, she would call me every week to see how I’m doing. She gave me ideas on what to look for, and who to talk do. She passed in 2015 because of sarcoidosis.

On the Job
What inspires you: Knowing that I helped somebody. The health aid for Senator Chuck Schumer called me. She said I heard you are coming to visit us. My mom was just diagnosed with sarcoidosis. She’s in the state of Washington. She didn’t know who to talk to and I found her a doctor in an hour. She’s doing much better. Things like that—just brightening up somebody’s day. Living with a rare disease can just be daunting.
What makes you hopeful: The research out there. For the first time we now have an animal model. They don’t know the cause of the disease, but know heavy dust and chemicals accelerate it. Where we are compared to where we were when I was first diagnosed is just night and day.
Best organization decision: I started out trying to raise money. The best decision I made was to stop worrying about that part of it and to start working with government officials to raise awareness. We raised so much more awareness. When I started, the government was investing no money into sarcoidosis research. NIH told me if we got a registry up and have 30,000 people sign on that registry, we would get money from the NIH. We did that in four months. We got $10 million from NIH. Making that move to change and work with government was the best decision. I can make more of a difference that way.
Hardest lesson learned: Keep the politics out of it. Rare disease doesn’t care whether you are a Democrat or Republican.
Toughest organization decision: Letting go of people from my organization. I had to let go of my vice president. It was a political thing. She wrote on Senator Schumer’s Facebook page “FU.” You can’t do that. Her page identified her as vice president of Sarcoidosis of Long Island. He was our biggest supporter. He actually introduced a bill to make April sarcoidosis awareness month and spoke about sarcoidosis when he introduced Hillary Clinton in Harlem.
Biggest missed opportunity: Not getting my story out there. I do have a unique story. Even if you put your story out there, it’s not about you. It’s about sarcoidosis.
Like best about the job: Helping people. I’ve made a lot of friends in the rare disease community. I’ve lost a lot of friends because of my illness. I tell them I’m going to be somewhere and can’t go because I’m sick, and they don’t understand. It’s an invisible disease. If you look at me I look fine. When they don’t see it, they can’t understand it.
Like least about the job: I wish more of the rare disease community would collaborate and work together. Most of us have the same problems. We all have the same common goals. Why don’t we work together? If the Batten disease community or the Duchenne community get a treatment, I don’t get jealous. That’s a great win for the community. We need to collaborate more.
Pet peeve: Too much talking behind people’s back. It’s a small community and everyone talks about everyone else. If it doesn’t have to do with me, I don’t want to hear it.
First choice for a new career: Sportscaster

Personal Taste
Most influential book: Karen Guffy, My Life as an Incurable Wise Ass. She has sarcoidosis.
Favorite movie: Silence of the Lambs
Favorite music: Journey
Favorite food: Chicken parmigiana.
Guilty pleasure: My coffee every morning. I’m not supposed to have coffee.
Favorite way to spend free time: With my family. I get so much pleasure being with my wife and daughter.