Category: C82976

Lacey Smith

Lacey is a founding member of Ogden Cares and the mother of Savannah, who was diagnosed with Ogden syndrome in 2015 at nearly five years old. Inspired by Savannah’s journey with Cerebral/Cortical Visual Impairment (CVI) and Ogden syndrome, Lacey became a Teacher of Students with Visual Impairments (TVI) and now works as the CVI Parent Community Manager at the CVI Center at Perkins School for the Blind, where she supports children and families impacted by CVI, rare diseases, and multiple disabilities. She also leads outreach for rare disease patients through the CVI Center.

Outside of work, Lacey dedicates countless hours to advocating for Savannah and supporting families navigating similar journeys, always striving to help individuals reach their highest potential

Camila Tomazella

Camila is the mother of Giovana, who was diagnosed with Ogden syndrome in 2025 at the age of eight months. She is a Brazilian lawyer and accountant, and a partner in a tax consulting practice at a law firm. Since her daughter’s diagnosis, Camila has been passionate about the cause and bringing together more individuals with the same diagnosis. She believes that increasing the number of known diagnoses directly contributes to a deeper level of social awareness, enhancing the visibility of the condition, strengthening support networks for families, and consistently encouraging the development of and investment in research. She is also the direct contact for Latin American families.

Colleen Ortakales

Colleen Ortakales is mom to George, who was diagnosed with Ogden syndrome in 2024, at age of 2. She is a second grade teacher and believes that true progress begins with community awareness and meaningful inclusion. Colleen aims to give a voice to those who are often unheard, and ensure that every child—regardless of their diagnosis—is provided the resources and visibility necessary to thrive.

Jeff Ortakales

Jeff is dad to George who was diagnosed with Ogden syndrome in 2024, at the age of 2. He is an Engineering Team Leader at Hypertherm and has served on the company’s nonprofit foundation as part of the HOPE Team and has also served as the STEM subcommittee chair. Jeff looks forward to working with the Ogden Cares organization and community to help bring all of the families the support they need and find a cure.

Nikki George

Nikki is the mother to Millie, who was diagnosed with Ogden Syndrome in April 2020 when she was 13 months old. Millie inspired a new-found love of Science and Genetics in Nikki and a passion for advancing therapeutic interventions targeting the mechanism of disease in patients with rare syndromes.  After losing her mother, who received a diagnosis of bulbar onset ALS five months after Millie’s diagnosis, Nikki lives by the mantra “Incurable is unacceptable.”

Monika Kustermann

Monika is the mother of Victoria, who was diagnosed with Ogden syndrome in 2023 at the age of eight months. She is a postdoctoral researcher at the Medical University of Vienna (Austria). Since her daughter’s diagnosis, she has used her scientific background to advance basic research into Ogden syndrome, as well as to bridge the gap between complex research and affected families. She is also the direct contact person for affected families in German-speaking countries.