About Elle
Time Is Precious—Help Us Fight for Elle
Our daughter Elle was diagnosed with Sanfilippo syndrome - a rare form of Childhood Dementia that is fatal and has no cure. Without a treatment, she will continue to lose the ability to walk, talk, play, and recognize the people she loves.
We’re not just fighting for treatments—we’re fighting for time.
In June 2025, our family learned that our daughter Elle has Sanfilippo Syndrome Type C, a rare genetic disease often called childhood dementia.
There is currently no approved treatment.
Children with Sanfilippo gradually lose skills they once had. They lose speech. They lose mobility. They lose independence.
We refuse to accept that outcome without a fight.
We are working with researchers, doctors, advocates, and families around the world to help accelerate treatments for Elle and every child living with Sanfilippo.
Time matters.
Sanfilippo is a form of childhood dementia — and without a cure, children like Elle may only live into their teens.
WHY DONATIONS MATTER
The Science Exists - Right Now
Researchers around the world are developing treatments for Sanfilippo Type C right now.
The challenge is funding.
Millions of dollars are needed to move promising therapies from the laboratory into children.
Collapsed Timelines
The goal is to get a safe and effective treatment to children as quickly as possible.
In order to ensure a treatment is both safe and effective, exhaustive testing is required and numerous regulatory thresholds must be met.
Most drug developers wait for all of the administrative tasks to be completed before manufacturing the drug - which will have been already tested and proven safe and effective.
Sanfilippo does not stop - every month of delay in treatment is more lost words, independence, and the memory of loved ones.
With funding, safe and effective treatments can be made available to our children sooner. Saving their skills and ultimately their lives.