Rare Leader: Kelly Maynard, President and Founder, Little Hercules Foundation

The Basics
Name: Kelly Maynard

Title: President and founder

Organization: Little Hercules Foundation

Disease focus: Duchenne muscular dystrophy (DMD) is a rare, progressive, muscle-wasting disease in which those diagnosed are unable to produce dystrophin, a protein essential for the repair and stability of muscle fibers. DMD is the most common and leading fatal genetic disorder in children, affecting approximately one in 5,000 births with an estimated 300,000 sufferers worldwide today. As the disease progresses, boys living with DMD typically lose the ability to walk between the ages of 8 to 12. Physical activity can be greatly limited throughout childhood. Parents and caregivers may choose to avoid some physical activity during early stage in order to preserve good muscle fiber for as long as possible. In addition to skeletal muscle strength and function, care for DMD includes a focus on heart and lung preservation. Those living with Duchenne typically lose their lives in their late teens/early 20s from heart or lung failure, although progression can vary greatly.

Headquarters: Dublin, Ohio

How did you become involved in rare disease: My son was diagnosed with Duchenne when he was five. He is now 11. After he was diagnosed, we went through the shock and grieving process. During that time, I was doing a lot of research combing the internet at all hours of the night trying to figure out how to stop what I knew was going to happen. There were no treatments.  It was the darkest moments of my life. We launched the foundation to fund research and propel it forward as quickly as possible.

Previous career: Program administrator, state insurance regulation.

Education: Pursued a degree in law enforcement at Columbus State Community College.

The Organization
Organization’s mandate:  Our mission is to serve patients and families living with Duchene muscular dystrophy through advocacy, awareness, family assistance, and research funding.

Organization’s strategy: Our strategy is to focus on gaps in services. Where there are needs not being met by government programs, social services, or other advocacy organizations, our strategy is to fill in there and serve families that way.

Funding strategy: Originally, we had a couple of annual fundraising events that have really grown. We get a lot of community support and corporate support. We aggressively go out and seek out grants and we’ve been pretty successful at that.

What’s changing at your organization in the next year: We are actively focusing on making healthcare coverage more patient-centered. We think that’s one of the biggest challenges that affect patients. We are entering a transformational phase in treating this disease, but the scientific advancements mean nothing if patients can’t access them. Health plans have limited access for patients, or created so many insurmountable hurdles to get access to approved treatments. Many of our patients are getting denied. These are children with a rare terminal disease, and many are not able to access the treatments and care they need through their private health plans or through Medicaid. We are actively engaging at a national level. We’ve had some success there and we want to expand on that.

Management Style
Management philosophy: Hire good people, give them direction, and get out of their way. I’ve been blessed to have hired three of the most amazing people. All of my employees are moms of children with Duchenne. Not only are they using their professional skills to help people in the community get access to what they need, they also need flexible employment because they are caregivers to kids with complex needs. I’m pretty proud of the fact that we’ve been able to put together this team of professionals that is doing amazing things and also allows them to still be the moms they want to be.

Guiding principles for running an effective organization: Always do the right thing. Your value system has to be reflected in everything you do. Do the right thing and serve the people you are supposed to serve.

Best way to keep your organization relevant: Speak up and insert yourself in the conversation. Right now, in the healthcare system there is a lot of talk about value-based pricing and how to develop those frameworks. It’s scary how many times we go to these meetings and patients aren’t included or consulted on that subject. Stay on top of the national conversation as it affects your community and the people you serve. Speak up and be bold.

Why people like working with you: I like to think it’s because we do what we say we’re going to do. Trust is very important to us. We work very hard to avoid duplication of efforts.

Mentor: Marissa Penrod, who runs another Duchenne organization named Team Joseph. I seek out her opinion and wisdom a lot. I looked up to her because I thought she was doing it so well and in such an impactful way. She wasn’t trying to compete with other organizations, and she wasn’t trying to own anything. She just wanted to serve. She’s my partner now in the family assistance program.

On the Job
What inspires you: Our beautiful boys. They handle the most challenging circumstances. They wake up every day facing whatever challenges come their way. It might be another loss. It may be realizing there’s something they can no longer do, such as lifting their hands to their mouth to feed themselves or hug you. They still wake up every day with a smile on their face ready to confront life. I have never met a boy with boy with Duchenne who doesn’t have the brightest smile in the room, ever.

What makes you hopeful: People who are way smarter than me who are working on cures.

Best organization decision: The best organization decision has been to expand into direct support services. Before that we were funding research and that’s great, but we realized there was a real need to help families now, in the moment. There are some real stories that would break your heart. We have some families in real crisis situations. This disease is really expensive on top of being emotionally and mentally taxing. We have single mothers out there with more than one boy with Duchenne. Imagine that. They still have to work. We need to do a better job of taking care of each other. That’s what I’m most proud of. It will always be the best decision we ever made. It just didn’t exist out there before.

Hardest lesson learned: When I started, I thought that if I went out and told my son’s story, people would throw money at me. Fundraising is hard. There are so many great and worthy causes out there. Everybody knows pediatric cancer, but nobody knows about Duchenne unless they are personally affected by it. I was very naïve at first.

Toughest organization decision: One that hit me really hard was when I had to part ways with the other Duchenne moms whom I originally founded the organization with. It was a tough decision because we were united in this cause and I thought we were unbreakable. It’s tough when you have to part ways with people and still maintain a good relationship, and your job is to still serve them, removing the emotional part of the job. Everything we do is so emotional.

Biggest missed opportunity: I can’t think of one, honestly. The first year I raised $35,000 and I thought, “This is too hard. I’m not good at this. I can’t do it.” And then I just dug my heels in and said, “I have no choice. I can’t quit Duchenne, and neither can my son. Failure is not an option.” Grit has guided us through. I think when we’ve seen an opportunity, we’ve figured out how to seize it.

Like best about the job: Telling people my son’s story and the story of all of these boys who live with this disease. There’s a lot of education that goes into what we do. When I find that powerful person who can make decisions that can impact our community and our patients, I like talking to them and humanizing the processes they oversee. If they are a Medicaid director, they probably rarely come across patients or beneficiaries of the Medicaid program. I like to find them and say, “Hi, my name is Kelly. My son has a rare disease. Here’s how what you do impacts our patients.”

Like least about the job: Witnessing things our families have to tolerate that they absolutely should not have to, like constantly fighting insurance battles. When you have limited time with your child, the last thing you should be doing is spending those precious limited hours fighting to get them what they need.

Pet peeve: What drives me bonkers is when health policy leaders make decisions that impact patients directly without including them in the conversation. They think they know what is valuable to my son and they’ve never asked me or him. We see this all the time. We see policies developed where patients and physicians who treat patients haven’t been engaged. If a drug company, a health plan, or whoever is deciding that if this drug only preserves arm function to the point where a child can only use their hands to drive a wheelchair and it’s not worth giving access to that treatment. Who are you to decide that? If my son was given the opportunity, he would tell them that’s his only form of independence. If he can’t do that, he’d be laying in bed all day.

First choice for a new career: I would be a lawyer who represented the underserved.

Personal Taste
Most influential book: Uncharitable: How Restraints on Nonprofits Undermine Their Potential by Dan Pallotta

Favorite movie: Norma Rae

Favorite music: Country

Favorite food: Salads piled high with unhealthy stuff

Guilty pleasure: True crime documentaries

Favorite way to spend free time: Cuddled up with my kids and dogs

January 3, 2019