David Law and Veena-Sison Law smile next to their baby son, Derek Law. The family continues to advocate for GM1 gangliosidosis research and awareness after their daughter Violet's death. Photo courtesy of David Law.

Following the death of his daughter, Violet, who died from a rare disease called GM1 gangliosidosis, Long Beach Memorial physician David Law is taking his family’s advocacy efforts back to the California State Senate.

On Thursday, Sen. Steve Padilla (D-San Diego) will present a resolution to declare GM1 Gangliosidosis Awareness Day in California on Thursday, May 23, 2024. The Senate will also adjourn in memory of Violet, as Thursday is also International Rare Disease Day.

Violet Law died from GM1 Gangliosidosis. Photo courtesy of the Law family.

GM1 gangliosidosis is a neurologically degenerative disease affecting the brain and spinal cord that causes physical and developmental disabilities, affecting 1 in every 100,000 to 200,000 people.

It is fatal in children and currently has no FDA-approved therapies, but the Cure GM1 Foundation (David Law is a board member) has raised nearly $5 million toward research and advocated for four clinical trials of potential treatments and medication.

“I still think about her every day,” Law said of his daughter, “but now I guess the love is transforming … into supporting other kids.”

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Resolutions are not binding law, so legislators must make a declaration every year to recognize May 23 as GM1 Day. Sen. Padilla has been a vocal ally in efforts to spread awareness of the disease, also presenting a resolution to recognize GM1 Day in 2023.

“It is my fervent hope that as we continue to raise awareness of this disease we can promote research that finally cures gangliosidosis,” Padilla said in an email. “The Law family are nothing short of heroes, honoring their beautiful daughter and helping other families in this cause.”

Padilla said he hopes to introduce a resolution next year to honor Violet and help continue the fight for a cure.

As David Law and his wife, Veena Sison-Law, return to work as doctors and continue to navigate life and advocacy after losing Violet, they cherish days with their baby boy, Derek, a healthy five-month-old whom David calls “the light of our lives.”

“Our baby Derek is growing up strong and beautiful, so we’re very grateful,” said David Law. “I think we’ll always have Violet in our hearts – and all of our actions, I would hope, show that she continues to live on through that.”

More information on the Cure GM1 Foundation can be found here.

Maison Tran is a fellow at the Long Beach Post. Reach him at [email protected].