When two-year-old Ellie Shamaly was diagnosed with Sanfilippo Syndrome last year, her entire family’s focus changed. Sanfilippo Syndrome is a fatal neurological disease in children that is often referred to as “Childhood Alzheimer’s.” Figuring out how to move forward became an urgent concern, as there is currently no FDA-approved treatment or cure for the condition affecting 1 in 70,000 children.
Photographs are care of Josephine ShamalySanfilippo can masquerade as autism, ADHD, or intellectual disability, and—since it is a rare disease—is often missed by medical practitioners making diagnoses. Ellie’s parents Kerry and Josephine know that they are Ellie’s fiercest advocates and that they cannot wait for medical practitioners to figure everything out for them. While researching Sanfilippo Syndrome and the options available to them and Ellie, they discovered the Cure Sanfilippo Foundation. Josephine shares, “We emailed the foundation the day Ellie received her diagnosis and within minutes were on the phone with the the president of the foundation, Glenn O’Neill. Glenn and his wife Cara started the foundation to save their daughter Eliza.”
In the three short years since the O’Neills founded the Cure Sanfilippo Foundation, more than $3 million has already been raised and dispensed in research grants to the scientists across the globe who are conducting the most promising research in the field. Last year, the foundation met its fundraising goal and to date has raised $5 million dollars for research! As the O’Neills note, “There’s HOPE for a cure, and we’re making sure there’s plenty of ACTION to make it a reality.” Their foundation’s website lists and explains in detail the research being conducted by the scientists to whom the foundation has awarded 10 grants since 2014, providing complete transparency to all donors.
In addition to funding critical research, the Cure Sanfilippo Foundation unites families finding themselves fighting on the same battleground. Families share information, research developments, resources, best practices, and experiences through the foundation’s open conference calls, organized events, and informal gatherings. Ellie’s parents profess, “We live our lives day-by-day, focusing on fighting for Ellie and keeping her happy. Things that we used to think were important are now trivial. All that matters now is our family and those we love.” Want to support Ellie’s family and the families of all children with Sanfilippo Syndrome in finding a cure for this degenerative and fatal disease? Use code GIVE934 at checkout today and PLAE will donate 10% of your purchase price to the Cure Sanfilippo Foundation. Shop now to earn a donation.