Dear Friends & Family,

Levi's journey has not been for the faint of heart. Levi was diagnosed with CTD at 6 years old, after being misdiagnosed for years. However, he never ceases to amaze us with his communicative intent, curiosity, and silliness.

A cure - even a treatment - would mean the world to us...one where Levi's impulsivity and behaviors wouldn't interfere with his daily interactions and activities, and one where he could capitalize even more on increasing his communication, curiosity, and silly personality! We want to see him truly engage in conversation and find relief from the intense emotional dysregulation that affects him daily. We want to help him continue building important adaptive skills, giving him greater independence and confidence.

Through it all, Levi’s laugh is our constant light. It often bursts out unexpectedly – unmistakable, joyful, and uniquely his. It’s the sound that reminds us why this fight matters so much.

AN AVALANCHE OF HOPE FOR KIDS WITH CCDS

WHY THIS MATTERS

Creatine isn't just for athletes – it's essential for brain development. Children with creatine deficiencies have a genetic deficit that prevents their body from making or using creatine causing developmental delays, speech difficulties, and seizures.

Holiday Heroes serves as ACD’s most important fundraising event.

100 % OF DONATIONS MADE DURING HOLIDAY HEROES GO DIRECTLY TO RESEARCH

ACD has invested over $7.6 million in research since its inception with over $5.1 invested in 2026 alone! Current research initiatives include:

UC Berkeley - 1-year research award to accelerate the development of a novel method to deliver a key enzyme directly into cells to enable creatine production in individuals with GAMT deficiency.
Johns Hopkins University - 2-year research investment to accelerate their work to deliver creatine to the brain, including to neurons, using dendrimer nanoparticles, without the need of a creatine transporter, to help patients with CTD.
Stanford University - 2-year research award to build upon their work developing new ways to deliver creatine directly into cells without relying on the faulty transporter protein that causes CTD.
Ultragenyx - Investment in the clinical development of a therapy for Creatine Transporter Deficiency (CTD) with a total commitment of $4 million as the program progresses.

OUR VISION FOR THE FUTURE

Since 2012, ACD has led the fight against creatine deficiencies. We've already added GAMT to U.S. federal screening guidelines and are seeing adoption grow worldwide. With CTD, we're working toward the same milestone - and ultimately, a cure. Our vision is that one day all creatine deficiencies will be identified and treated within seven days of birth and those already living with CCDS will receive treatments to achieve their maximum potential.

💙🧡 Join us. Be part of the breakthrough. Donate today.💙🧡

The Association for Creatine Deficiencies (ACD) was established in 2012, by parents of children diagnosed with Cerebral Creatine Deficiency Syndrome (CCDS) that decided a rare disease needs a unified community to affect change for the future. The ACD Board consists of unpaid CCDS parent professionals committed to this cause.

Team Levi

Holiday Heroes 2026