Add GM1 Gangliosidosis to the newborn screening in California
The Issue
Violet Aurora Sison Law was a beautiful, healthy baby—until she wasn’t.
Like many children with GM1 gangliosidosis, she appeared completely normal at birth. There were no warning signs. No reason to suspect anything was wrong. By the time symptoms appeared, irreversible damage had already begun. Unfortunately, she passed away from this disease at the tender age of 4.
But Violet's life was not without Hope. Through her life, she inspired a worldwide community of researchers, doctors, scientists, and philanthropists to champion her cause, and she was able to take part in a clinical trial that did for a time alleviate her symptoms. She was inspiration for the first GM1 Gangliosidosis Awareness Day recognition in California, and she has forever inspired her parents and family to advocate for GM1 kids and all those who suffer from rare disease.
What is GM1
GM1 gangliosidosis is a rare genetic disorder that causes progressive brain damage, loss of motor function, and early death in children.
For decades, there was little that could be done.
That is no longer true.
Why this matters NOW
Breakthroughs in gene therapy and emerging treatments mean that early diagnosis is now critical.
Children must be identified before symptoms begin—when treatment has the best chance to work.
Without newborn screening, that window is missed.
California’s opportunity
California has long been a national leader in newborn screening. Now, it has the opportunity to lead again.
For the last 4 years, Senator Steve Padilla (D-San Diego) has introduced a Senate Concurrent Resolution recognizing GM1 Awareness Day in California —an important step, and a testament to how urgent and pressing this matter is.
But awareness alone is not enough.
We call on the California Department of Public Health and state leaders to:
Initiate a formal evaluation of GM1 gangliosidosis for inclusion in California’s newborn screening panel
Fund and implement a pilot screening program to assess feasibility and impact
Work with clinicians, researchers, and advocacy groups—including Cure GM1 Foundation—to accelerate this process
Why this is urgent
Every child born without screening is a missed opportunity.
Every delayed diagnosis means lost time that cannot be recovered.
Families like Violet’s should not have to hear:
“If only we had known earlier.”
About the movement
Cure GM1 Foundation, founded by Christine Waggoner in honor her daughter Iris, is a leading advocacy organization dedicated to accelerating treatment, research, and awareness for GM1 gangliosidosis. Families, physicians, and researchers across the country are coming together to ensure no child is left behind.
California can act. The science is here. The need is urgent.
Add GM1 to newborn screening—and help honor the life of Violet and all those who have been affected by this terrible disease.
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The Issue
Violet Aurora Sison Law was a beautiful, healthy baby—until she wasn’t.
Like many children with GM1 gangliosidosis, she appeared completely normal at birth. There were no warning signs. No reason to suspect anything was wrong. By the time symptoms appeared, irreversible damage had already begun. Unfortunately, she passed away from this disease at the tender age of 4.
But Violet's life was not without Hope. Through her life, she inspired a worldwide community of researchers, doctors, scientists, and philanthropists to champion her cause, and she was able to take part in a clinical trial that did for a time alleviate her symptoms. She was inspiration for the first GM1 Gangliosidosis Awareness Day recognition in California, and she has forever inspired her parents and family to advocate for GM1 kids and all those who suffer from rare disease.
What is GM1
GM1 gangliosidosis is a rare genetic disorder that causes progressive brain damage, loss of motor function, and early death in children.
For decades, there was little that could be done.
That is no longer true.
Why this matters NOW
Breakthroughs in gene therapy and emerging treatments mean that early diagnosis is now critical.
Children must be identified before symptoms begin—when treatment has the best chance to work.
Without newborn screening, that window is missed.
California’s opportunity
California has long been a national leader in newborn screening. Now, it has the opportunity to lead again.
For the last 4 years, Senator Steve Padilla (D-San Diego) has introduced a Senate Concurrent Resolution recognizing GM1 Awareness Day in California —an important step, and a testament to how urgent and pressing this matter is.
But awareness alone is not enough.
We call on the California Department of Public Health and state leaders to:
Initiate a formal evaluation of GM1 gangliosidosis for inclusion in California’s newborn screening panel
Fund and implement a pilot screening program to assess feasibility and impact
Work with clinicians, researchers, and advocacy groups—including Cure GM1 Foundation—to accelerate this process
Why this is urgent
Every child born without screening is a missed opportunity.
Every delayed diagnosis means lost time that cannot be recovered.
Families like Violet’s should not have to hear:
“If only we had known earlier.”
About the movement
Cure GM1 Foundation, founded by Christine Waggoner in honor her daughter Iris, is a leading advocacy organization dedicated to accelerating treatment, research, and awareness for GM1 gangliosidosis. Families, physicians, and researchers across the country are coming together to ensure no child is left behind.
California can act. The science is here. The need is urgent.
Add GM1 to newborn screening—and help honor the life of Violet and all those who have been affected by this terrible disease.
The Decision Makers
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Petition created on April 22, 2026