Hope Has a Name: Lisa Hoffman, Angelman Syndrome, and the Fight for a Brighter Future

Lisa M. Hoffman, a Justice for Kids Partner, represents injured children in foster care, many of whom are disabled.

Every year on February 15—International Angelman Day—families around the world pause to raise awareness for a rare neurogenetic condition that forever changes lives. For Lisa, this day is deeply personal.

Her five-year-old son, Heath, has Angelman Syndrome.

Her hope inspires her work as both a mother and an advocate for children who cannot yet advocate for themselves—personally and professionally.

Angelman Syndrome is a rare neurogenetic disorder caused by the loss or malfunction of a gene on the 15th chromosome, hence the significance of Feb. 15 as its global awareness day. The condition impacts approximately 1 in 15,000 people and causes developmental delays, intellectual disabilities, severe speech impairment, motor and balance challenges, seizures, and other lifelong medical needs. Children with Angelman Syndrome are often unable to communicate verbally, requiring extensive therapy and lifelong care.

Heath was diagnosed at age two. Upon receiving his diagnosis, Lisa remembers being filled with fear, grief, and impossible questions about the future: What does this mean for his life? For our family? But alongside that grief came something equally powerful: hope.

“Hope is what keeps you going,” Lisa says. “You grieve the future you imagined, and then you roll forward—determined to create a different one.”

This very determination is at the heart of Lisa’s advocacy and her connection to Justice for Kids’ mission of giving a voice to the voiceless. We are so honored to share her incredible work and story with you. In November 2025, Justice for Kids proudly served as the presenting sponsor of the third annual Hole Out Fore Heath Golf Tournament, held at Hidden Lakes Golf Course in New Smyrna Beach. Organized by Lisa and her husband—who works at the course—the tournament brought together 144 golfers of all ages to support the Foundation for Angelman Syndrome Therapeutics (FAST), a nonprofit dedicated to curing Angelman Syndrome through aggressive research and groundbreaking advocacy.

The day was joyful by design: breakfast and coffee, contests, raffles, a silent auction, prizes, laughter, sunshine—and adorable Heath himself, smiling and soaking it all in. “He’s a joy-bringer,” Lisa says. “His smile, his laughter, his zest for life—he lights up every room.”

But beneath the fun was a serious purpose: funding a brighter future.

FAST is, incredibly, a parent-led organization created by families who downright refused to accept slow progress. Frustrated by the pace of traditional research, they built a foundation focused on translational science, or moving discoveries from the lab to real-world treatments as quickly as possible. Today, scientists know the exact genetic cause of Angelman Syndrome, and multiple therapies are actively moving through the research and clinical trial pipeline. This clarity gives Angelman Syndrome one of the highest probabilities of being cured among neurogenetic disorders—a fact that fuels extraordinary optimism in the community.  There is real, tangible hope for a cure; that’s what keeps Lisa and her family going.

For Heath, progress is already hard-earned. He participates in speech therapy, physical therapy, and up to 40 hours a week of ABA therapy. And every milestone is monumental. “He has to work so much harder to do the things we take for granted,” Lisa shares. “Any progress he makes is huge for him, and for us.”

What Lisa hopes for most is simple and profound: to hear Heath’s voice.

To see him write his name or play a sport.

To expand his ability to communicate and understand the world around him.

This fight extends beyond fundraising. Lisa and her family participate in annual advocacy walks each May, a yearly Gala and lobbying days—pushing for research funding, legislative support, and faster access to therapies.

Justice for Kids’ continued sponsorship of Hole Out Fore Heath reflects our unwavering commitment to children with special needs and families navigating life-altering diagnoses. “As parents and caregivers, we’re fighting for the best possible outcome for our children,” Lisa says. “That aligns completely with what we do at Justice for Kids—creating better futures, even when the road is hard.”

On this upcoming International Angelman Day, hope is not abstract. It is active, funded, researched, and within reach. Lisa, we stand behind you all the way.

To learn more or support the fight for a cure, visit cureangelman.org or donate at give.cureangelman.org.