The ACD was established to unite the Cerebral Creatine Deficiency Syndrome community. This includes patients, families, and allied health care professionals. The ACD board members welcome any questions or comments concerning CTD, GAMT, AGAT, and CCDS at the email addresses listed below.
Whitnie is a graduate of the University of Texas with a degree in Public Relations. She lives in the beautiful Texas Hill Country with her husband, Steve. They have three children, Rhett (10), Reid (8) and Cora (6). Reid was diagnosed with CTD at 2 1⁄2 years old. Whitnie is a passionate advocate for CCDS. She has served as a panelist at the FDA Inborn Error of Metabolism public forum and is actively involved in fundraising, marketing, and other initiatives to bring heightened awareness to the CCDS community. Aside from her work with the ACD she also runs the graphic design company, Strauss Design Group, LLC.
Heidi lives in Salt Lake City, Utah with her husband, Trey and their four children. Samantha (14) was diagnosed with GAMT deficiency at 5-1/2 years of age, after years of an initial diagnosis of PDD-NOS. Ultimately, the onset of seizures is what led to her GAMT diagnosis by an MRI spectroscopy and then DNA testing. Louis (6) was diagnosed with GAMT deficiency and began treatment at birth. Louis is not affected by GAMT. Heidi’s hope is for creatine deficiencies to be screened for at birth and for the development of a treatment for CTD. Heidi has a background in software development and serves as patient advocate representative and Utah team lead for the Mountain States Regional Genetics Network and patient advocate representative for Utah’s Newborn Screening Committee. She also writes for the Utah Department of Health Newborn Screening Program website.
Kim is a Co-Founder of the Association for Creatine Deficiencies (ACD) and currently serves as the Director of Advocacy. Her passion for these rare diseases comes from both of her own children being diagnosed with GAMT. Kim is a graduate of San Diego State University with a B.A. in Communications and has over 25 years of sales management and recruiting experience. She has taken her passion for helping children with Creatine Deficiencies to the state and national level, in advocating for Newborn Screening. Kim resides in Carlsbad, California with her husband Grant, and two children, Ty and Paige.
Melissa is the Deputy Director for the Office of Environmental Health and has worked in public health for 25 years with the Mississippi State Department of Health. She is a graduate of the University of Mississippi with a degree in Biology and Chemistry. Melissa lives in Morton Mississippi, with her extraordinary husband of 24 years, Tony. They have two children. Will is 22 and was diagnosed with CTD when he was 12. Charlie is 16. Melissa hopes that her “veteran” status dealing with CTD can help families with younger children diagnosed with the condition successfully navigate their journey.
Linda is a licensed vocational nurse and a small business owner. She resides in Southern California with her husband, Bob. They have two sons, Kyle (28) and Chad (22). Chad was diagnosed with an unspecified mitochondrial disease at age 2 and at age 9 was confirmed to have CTD. Linda has also served as a Board Trustee for the United Mitochondrial Disease Foundation (UMDF). Linda is especially focused on supporting CCDS Research.
Laura Trutoiu is a computer scientist and researcher. She holds a PhD from the Robotics Institute at Carnegie Mellon University and a BA in Computer Science from Mount Holyoke College. She has conducted research in several industry labs including Disney Research, Industrial Light and Magic, Oculus Research & Facebook, and currently Magic Leap. Her research spans computer graphics, human perception, and sensing and interaction for virtual and mixed reality systems. Laura lives in Seattle with her husband Amar (CMU PhD), their cat Spocky, and their son Rohan. Rohan was diagnosed with Creatine Transporter Defect in June 2017 when he was 2 and a half years old. Laura is passionate about supporting the potential for scientific discovery to help and serve the rare diseases community in general and creatine deficiencies in particular.