RARE Daily

Rare Leader: Marissa Penrod, Founder and CEO, Team Joseph

April 1, 2021

The Basics
Name: Marissa Penrod

Title: Founder and CEO

Organization: Team Joseph

Social Media Links:

Disease focus: Duchenne muscular dystrophy is the most common degenerative genetic muscle disease in boys. As most boys are growing stronger and gaining independence, boys with Duchenne are losing muscle function and mobility. Duchenne is not limited by race or socio-economic status. Typically diagnosed between the ages of 2 and 6, it affects 1 boy out of every 4,500. At this time, there are several approved treatments for a portion of Duchenne patients with specific mutations. Although there are many patients still waiting for a treatment that stops the progression of Duchenne, there is great hope. There is more promise than ever before that our boys will be able to play football with their friends, run through their backyards catching bugs, climb the steps on the school bus, maintain their mobility and independence, and live long healthy lives.

Headquarters: West Bloomfield, Michigan

How did you become involved in rare disease: I became involved because of my youngest son Joseph. He was diagnosed with Duchenne muscular dystrophy at age 5.

Previous career: Worked in advertising, public relations, and education.

Education: Bachelor’s degrees in business and communications and a teaching certificate from Grand Valley State University

The Organization
Organization’s mandate: Our mandate is to do everything we can to make life with Duchenne better. That includes funding cutting-edge research. In the recent past, we’ve launched the Duchenne Family Assistance Program with our partners at Little Hercules Foundation. We help families with mentoring and insurance denials, as well as direct assistance for things like equipment, home modifications, accessible vehicles, and travel expenses to get to doctor appointments. A family’s ability to care for their child should never be dependent on their finances.

Organization’s strategy: When you’re the founder of an organization and a member of the rare disease community and you’re surrounded by other people in the same situation, sometimes we think we know all the needs in the community. But we don’t know it as well as we think we do until we start asking questions and really listening. Our strategy is to be in constant communication with Duchenne families and patients and really listen to what their struggles are, what their pain points are, and never assume that because I have a son with Duchenne, and I live with this, that we know everybody’s story. We all have things to learn from each other.

Funding strategy: Our funding strategy is varied, and we look for as many funding sources as possible. We have a strong individual donor base, and we also receive grants and corporate support.

What’s changing at your organization in the next year: Although there are several approved therapies for Duchenne, we have quite a long way to go until we have a treatment for a hundred percent of the boys and young men, and the rarest of the rare—the females with Duchenne. We still believe that research is hope for the future, but we also want to provide help for families right now in this moment. We do quite a bit of that through the family assistance program, but what we’re starting to look at is what the caregivers go through. We celebrate that the life expectancy for Duchenne has increased, but we have to look at the whole picture—when the life expectancy of a young person with a severe, serious, long-term disease increases, it also means that the caregivers are getting older. We need to have more critical conversations about how we support caregivers in Duchenne in particular, and in rare disease in general.

Management Style
Management philosophy: I always hire for personality and passion, knowing that we can teach skills. The key is to find people with a great attitude and a strong work ethic who want shared ownership of our mission and then let them shine.

Guiding principles for running an effective organization: One of our guiding principles is a question. It’s “What is best for the boys we serve?” We ask that all the time when we have decisions to make. The other guiding principle is to stay true to our vision while remaining open to the potential for change. Stay focused on what it is that we have committed to doing in our community and the impact that we want to make.

Best way to keep your organization relevant: That’s an easy one. Look for gaps in services. We look for needs, we look for where people are suffering the most, and where we can help.

Why people like working with you: I’m committed to helping the community and I encourage new ideas, partnership, and collaboration. We have a lot of fun. I tell people that we are going to change the world and we’re going to have a whole lot of fun while we do it.

Mentor: My dad. He’s no longer with us. My dad loved everybody. He loved people. He loved their stories and loved their flaws and their strengths. He was a great listener. He did everything he could to let people know that he cared. That’s what this is about—this rare disease community and running a nonprofit. My dad instilled in me a desire to lead with love.

On the Job
What inspires you: That’s such a straightforward one. For what we do here, it’s primarily my Joseph. But it’s also my other kids. The siblings often get overlooked in a situation like this and they make sacrifices too, even when they aren’t asked if they want to. It’s Joseph, it’s my own kids, and it’s every child and young man that we serve as well as their families.

What makes you hopeful: What makes me hopeful is the increased amount of collaboration that I’m seeing in the rare disease space. People are embracing how much potential we have when we work together. That’s what makes the rare disease community strong. That’s what will ultimately get us across the finish line to having more treatments and a better quality of life for the people who we serve.

Best organization decision: The best decision was to start Team Joseph. I was not trained in how to run or start a nonprofit. I knew something about it, but nobody trains you for this life as a rare disease parent and as a nonprofit founder. A lot of people will say, “There are enough nonprofits out there. Don’t do it. It’s so much hard work.” But I knew there were gaps we could fill. I felt a pull and I could feel it in my gut that this is what I was supposed to do. That was the best decision I made—just to go for it and take a leap of faith.

Hardest lesson learned: The hardest lesson I’ve learned is just to move faster. To gather good information, don’t overthink things and make quick decisions.

Toughest organization decision: What’s toughest is to not do everything. It is to understand that sometimes we wish we could help every single person and address every single need. The toughest decisions are knowing when to hold back, or when we have to put something on our radar for next month or next year.

Biggest missed opportunity: I always wish I could do faster, but I’m not sure that’s a missed opportunity.

Like best about the job: I love that we get to change people’s lives and let them know that they don’t have to walk this path alone.

Like least about the job: That I live Duchenne 24-7 and that I’m never done.

Pet peeve: People who compete rather than collaborate.

First choice for a new career: I would be a writer living on the beach.

Personal Taste
Most influential book: When Things Fall Apart: Heart Advice for Difficult Times by Pema Chodron

Favorite movie: E.T. the Extra-Terrestrial

Favorite music
: I love all genres, but I’m a little partial to classic rock and Motown. It’s my Detroit roots.

Favorite food: Homemade pasta

Guilty pleasure: Naps

Favorite way to spend free time: Sleeping, hiking, spending time with my kids, and being in my garden.

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