Association for Creatine Deficiencies adds 3 trustees, 2 advisors

The Association for Creatine Deficiencies expanded its board with three new trustees and two advisors, adding leaders with rare-disease, finance, engineering and military experience. The move comes as the group pushes harder on awareness, newborn screening and treatment research for cerebral creatine deficiency syndromes.

Why it matters: - The Association for Creatine Deficiencies is adding leadership with direct family ties to creatine deficiency syndromes and professional experience in drug development, finance, engineering, defense and advocacy. - ACD is trying to speed up awareness, research and partnerships for cerebral creatine deficiency syndromes, which can be missed or misdiagnosed as autism, cerebral palsy or epilepsy. - The group says early diagnosis and intervention are critical to improving quality of life and longevity for patients with CCDS.

What happened: - ACD announced the addition of three trustees: Seung Chun, Carole Chehowah and Matt Henley. - ACD also named Kristofer DeVault and Kelly Johnston as board advisors. - The announcement was made June 10, 2026, from Carlsbad, California.

The details: - Seung Chun has nearly 15 years of experience in pharmaceutical drug development, with a focus on rare diseases. - Chun has worked on clinical trial initiation and regulator engagement to advance drug development plans. - Chun earned a Bachelor of Science in biology from the University of California, San Diego, where she researched neurodegenerative diseases. - Chun lives in Los Angeles with her husband and son, Asher, who was diagnosed with creatine transporter deficiency in 2022 at age 2. - Carole Chehowah has nearly 25 years of experience in finance. - Chehowah has spent nearly 20 years supporting families affected by CTD and has focused on awareness and research funding in France. - Chehowah also organizes symposiums and events across France and Europe to raise visibility for the syndrome. - Matt Henley has nearly 20 years of business experience, including more than a decade in engineering and construction. - Henley oversees corporate development at Verdantas, an environmental science and engineering services firm with more than 2,000 employees. - Henley’s background includes public, employee-owned and private-equity-backed businesses, giving him experience in governance and financial oversight. - Henley holds a Bachelor of Arts from Washington University in St. Louis and an MBA from The Wharton School at the University of Pennsylvania. - Henley lives in Rhode Island with his wife and two children, including a son diagnosed with CTD in 2024 at age 4. - Kristofer DeVault is an active-duty U.S. Marine Corps major serving with Marine Corps Special Operations Command. - DeVault’s role at MARSOC includes programming and resourcing future capabilities for special operations forces. - DeVault holds an MBA from UCLA Anderson School of Management and a Master of Science in finance from the Naval Postgraduate School. - DeVault brings experience in financial management, acquisition and strategic partnerships. - DeVault is involved with ACD on fundraising, awareness and strategic initiatives to accelerate treatment development. - DeVault’s advocacy is driven by his son’s CTD diagnosis. - Kelly Johnston has more than 20 years of experience in the beverage industry building relationships and growing businesses. - Johnston and his wife, Margy, are raising two children, including a son diagnosed with CTD in December 2025 at age 4. - Johnston said the family challenge turned into a push for awareness, connection and progress in the rare disease community. - ACD Board Chair Dan Coller said the expansion reflects how far the creatine deficiency community has come since ACD began in 2012. - Coller said the additions strengthen ACD’s ability to think bigger, move faster and build partnerships to change the future for people living with CCDS. - ACD’s mission is to eliminate the challenges of cerebral creatine deficiency syndromes. - ACD also works to educate patients, families and the public, advocate for newborn screening, and fund medical research for treatments and cures. - The organization says patients are often first diagnosed with autism, cerebral palsy, epilepsy or other disorders because CCDS symptoms can resemble those conditions. - More information is available at ACD’s website. - ACD also listed social channels on LinkedIn, Instagram, Facebook, YouTube, TikTok and X.

Between the lines: - The board expansion mixes subject-matter expertise with personal experience, which can help ACD balance scientific advocacy with family-led urgency. - The addition of advisors from military and consumer-business backgrounds suggests ACD wants broader operational and fundraising support, not just clinical knowledge. - ACD’s focus on newborn screening points to a strategy aimed at earlier detection before symptoms are mistaken for other disorders.

What’s next: - ACD is likely to lean on the new trustees and advisors to expand fundraising, awareness efforts and treatment-development partnerships. - The organization’s broader goal remains improving screening, diagnosis and research outcomes for families affected by CCDS. - The newly named leaders are positioned to help ACD reach clinicians, researchers, donors and affected families across the U.S. and abroad.