In 2015, life turned upside down for Kim Burd and her family when her 3-year-old son Baron was diagnosed with Leigh syndrome, a form of mitochondrial disease. “I was beside myself,” says Kim. “I had never heard of Leigh syndrome.”

Leigh syndrome is a complex disorder typically caused by dysfunctional mitochondria — the tiny “batteries” inside cells that generate most of the energy the body’s organs need to function. This impaired cellular energy production can cause patients to experience progressive weakening of many organs, including their muscles, heart and central nervous system.

At the time, Baron was being treated by a team in his hometown of New York, but after diagnosis, he was immediately referred to Children’s Hospital of Philadelphia (CHOP) for care. “It was upsetting that we couldn’t find the level of complex care we needed in New York,” Kim shares.

“I couldn’t find one doctor who was well-versed in mitochondrial disease. So, coming to CHOP was a no-brainer. As a parent, you go to where the help is and where the best research is.”

For the next 10 months, Baron and his family traveled to Philadelphia every other week to be seen by the Mitochondrial Medicine team at CHOP. They still find themselves at CHOP several times a year to receive care. Since he was little, Baron loved taking the train from Penn Station. He became fond of visiting the aquarium and the Philadelphia Zoo. As for Kim, she’s a big fan of Rittenhouse Square, which reminds her of Madison Square Park. Seven years on from Baron’s diagnosis, the family knows that CHOP is the place to be, for them and for others. 

“CHOP is the whole package in terms of complex care,” Kim asserts. “You meet the most wonderful doctors who just really care about you and your family as a whole. They give you so much information and they direct you where you should go next…It’s a level of care you won’t experience anywhere else.”

Kim’s experience at CHOP inspired her to get involved at a deeper level. She joined the Mitochondrial Medicine Advisory Board. She recalls that in a meeting of the board three years ago, they were looking at the budget and philanthropy numbers were low. Kim knew she was ready to step up and make a difference. Her motivation to speak out came from a deep desire to drive meaningful change in the scientific and medical communities. She held a fundraising event in Manhattan with about 45 people in attendance, and they raised over $56,000 for Mitochondrial Medicine at CHOP. But for Kim, the monetary amount was equally as important as raising awareness. 

“You learn about mitochondria in seventh grade science, and then you forget about it.” She emphasizes the universal importance of mitochondria. “We all have mitochondria,” Kim says. “That’s something that connects every single one of us, whether your mitochondria are functioning properly or you’re living with a mitochondrial disorder like my son. If people are educated about it, they’ll start to understand just how impactful these tiny structures are — and how much of a difference awareness and understanding can make.” 

The fundraiser was rebranded as the Powerhouse Fundraiser — mitochondria are referred to as the “powerhouses of the cell” because they produce most of the cell’s supply of energy. 

In March 2025, the first-ever Powerhouse Fundraiser was a spectacular event, raising over $300,000. “I knew we needed to educate the powerhouses in the room,” she says, referring to potential donors, researchers and advocates. “If they felt compelled to give, they would know they could change research as we know it.” By shedding light on the realities of mitochondrial disease, she aims to spark investment in innovation and inspire action through understanding.

“It’s really important to me that if you give a gift, you believe you can make an impact and help children live a better life.”

The Powerhouse Fundraiser brought together patient families, doctors, members of the pharmaceutical industry and donors. Kim asserts that the atmosphere is not your typical New York fundraising event: “We’re building a community and relationships, and it’s a safe space. You can come and speak freely about your child with disabilities.”

And as for next year’s event?

“It’s going to be bigger and better,” Kim says with confidence. “I have a vision, and CHOP has been so supportive and lets me do my thing. It’s going to be really exciting.”

While Kim plans for bigger and better, her advice to people who are just getting started in fundraising is to start small. “Start with your community, your friends and family. Focus on getting the formula right, even if you start out having people over at your house to raise awareness. Don’t focus so much on the money — it will come.”

Kim is clear about what inspires her to continue to do this work. 

“Baron changed my entire life,” Kim shares, her voice full of emotion. “I want him to experience as much as he can.” For Kim, motherhood has been nothing short of transformative. It wasn’t until her son Baron came into her life that she truly began to understand the depth of love, joy and surprise that comes with raising a child — especially a child with special needs.

It’s clear that Baron brings a bright, energetic spirit to every room he enters. But what has surprised Kim the most over the course of his healthcare journey isn’t just his constant smiles or his sense of humor, but the unexpected things he can do all on his own.

“He loves soccer, he loves to kick a ball,” she says. “It’s funny because I never even knew he was capable of doing that.”

That simple act — kicking a ball — became a powerful symbol for Kim. It was a reminder that children, especially our own, often possess talents and joys we never could have predicted. All they need is the space to grow and the freedom to express themselves.