Help us reach our family's $50,000 goal!

Meet Lucas

Lucas is a bright, loving, and resilient boy who faces daily challenges due to CTD, a rare genetic disorder that limits his brain’s ability to access creatine, an essential compound for energy and development. This condition impacts his speech, cognitive abilities, and motor function, yet his spirit remains unbreakable. Despite the hurdles, Lucas continues to inspire those around him with his determination, joy, and unwavering courage. But he, and so many other children like him, need a breakthrough. There are currently no FDA-approved treatments for CTD, and research is crucial to finding therapies that could change lives.

Since 2012, ACD has led the fight against creatine deficiencies. With 100% of Holiday Heroes donations being directed to research, your participation in this campaign is crucial in helping ACD continue that fight.

By donating today, you are directly supporting critical research, drug development, a path toward clinical trials, and resources that give hope to families affected by CTD. Every dollar brings us closer to answers, closer to a future where children like Lucas can thrive. Whether it’s funding scientific advancements or helping families access care, your generosity makes a real impact. Together, we can rewrite the future for Lucas and countless others. Please consider making a donation and being part of this journey toward a cure.

Your Holiday Heroes Donation Supports Research

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 an investigational therapy for Creatine Transporter Deficiency (CTD) with a total commitment of $4 million as the program progresses.

Research Fellowship

Help us award our 6th year of research fellowships supporting 12 months of CCDS research for young researchers establishing their careers.

CTD Newborn Screening Research

Support assay development for CTD newborn screening technology enabling advocacy for early diagnosis of Creatine Transporter Deficiency.

"I haven't walked away from my mission."

Our son Lucas lives with Creatine Transporter Deficiency, and this documentary, Life of Lucas, is our family’s story of what that really looks like day to day. View the full-length film here, and make a donation of support to help us ‘Race for a Cure’ below.

Jeffrey Allen
Dad to Lucas and Jack
ACD Board Member
Beast Games Season 1 Champion

Join Me in the Fight to Cure Creatine Deficiencies

For hundreds of children around the world living with a cerebral creatine deficiency, every day is unpredictable.

These rare genetic disorders disrupt the brain’s ability to process or transport creatine, a vital molecule for energy, especially in the brain and muscles. As a result, children may face developmental delays, speech and motor challenges, seizures, behavioral differences, and frequent medical interventions.

There is hope on the horizon!

In some forms of the condition, early intervention with supplementation has led to dramatically better outcomes. Though CTD remains without a proven cure today, early studies and emerging research are illuminating a path forward. Your support can accelerate that journey.

Your support fuels the race for a cure for Creatine Deficiency Syndromes for children around the world!

The Association for Creatine Deficiencies (ACD) is leading the way to cure Cerebral Creatine Deficiency Syndromes! The Race for a Cure campaign has mapped a clear path to treatments by 2028. Learn more here.

How ACD Makes a Difference

New Treatment Research Projects

Research Fellowships Grants

Basic CCDS Science Investigations

Family Support Resources

Newborn Screening

CCDS Annual Conferences

Jeffrey Allen Rings Nasdaq Bell

In recognition of his Beast Games win and CTD advocacy, Jeff rang the Nasdaq Closing Bell on July 23, 2025 alongside Beast Industries executives and members of the ACD community.

Video 0:00 – 8:30: Jeff and ACD kids on the Nasdaq screen in Times Square.

Video 11:54: Jeff’s remarks at the Nasdaq podium.

Video 15:50: Countdown to the closing bell.