EP07 – Changing Lives One Child at a Time with Team Joseph CEO & Rare Mom Marissa Penrod
When Marissa’s five-year-old son Joseph was diagnosed with Duchenne muscular dystrophy, she made a silent promise that she would fight for him and channel her grief into something that would help him. Today, she is the CEO and founder of Team Joseph, an organization with a mission to fund research to find a cure for Duchenne muscular dystrophy and support families with immediate needs related to caring for a child with Duchenne. Marisa is also the host of the Making Our Way Podcast, a place for conversations about some of the toughest and best moments in life. In this episode, Marissa shares both her insights on starting an organization and her tips on how to best work with existing organizations.
Episode Highlights
Can you give us some background on your family and your son Joseph?
Joseph is now 18, and he’s ready to go to college. When he was born, we didn’t know anything was going on, and I had never heard the word Duchenne. Duchenne is degenerative and progressive. I took him to a pediatrician, and she sent me for blood work, and I had an appointment for a neurologist the next morning. Within the course of 24-hours, our lives were turned completely upside down.
Can you talk a little bit about getting a diagnosis with no treatment?
When Joseph was diagnosed thirteen years ago, there were a handful of clinical trials. The growth, progress, and research has been exponential. We have a couple of approved treatments that are mutation-specific. Those treatments don’t apply to Joseph yet. It’s that duality of very hopeful, but it’s not quite there for my son yet. So we are cheering everyone on, and we believe very much that the answer is coming for everyone. But we are just living life as it is. The sooner I accepted that and leaned into that, the more peaceful my life got. Focus on research, advocate, but you still have to live your life.
Can you tell us more about Team Joseph and what led you to start the organization?
I started it in my heart the day that Joseph was diagnosed. The doctor said there’s nothing you can do. A switch was flipped, I thought, nobody is going to advocate for my little boy like I will. I knew I wasn’t going to take it sitting down. This journey is going to be about love. I wanted to fund research. We found that people were struggling with resources and expenses and navigating a complex medical system and insurance system. So my friend, who also has a foundation, and I came up with the Family Assistance Program to help families with home modifications, fighting insurance, and getting on Medicaid waivers. Caring for a child should never be dependent on your resources. We change lives one child at a time.
What advice would you give other families who are considering starting their own organization?
Follow your heart but do it intentionally. Assess the landscape. Look for what you think you can contribute that’s not already being done. The most powerful nonprofits are ones that can fill gaps. Don’t duplicate what someone is already doing and doing it well. Collaborate and make friends with other nonprofits. What do you feel passionate about? What gaps can you fill? What’s not being done, and how can you collaborate? That’s what makes you powerful in terms of the impact you can have.
What advice would you give to parents on how to best work with existing foundations?
Be kind and give grace. So many foundations are started by parents, and everyone who starts a foundation has good intentions. Find out how you can be helpful. Ask the foundation what you can do to help. It builds teamwork, and it shares responsibility, but it also shares the joys and successes. Have an open mind and an open heart and figure out how to help the community in the biggest way.
What’s the best piece of advice you can give a mother whose child is newly diagnosed with a rare disease?
The best thing I could say is you’re going to be okay. You may not be okay in moments, but in the big picture, you’re going to be okay. There are really difficult moments, but there’s so much joy. This will not be the life you expected, but there is so much joy. When you go slower, you see more. Joy comes in different forms. I encourage people to feel everything. Understand that there is duality; you can feel two things at once. Be gentle on yourself. Let your child teach you; let them lead the way. They will show you the way if you’re open to it.
