Cody Stevens is our President and Chief Executive Officer, as of July 2020. He was first introduced to the PMG Awareness Organization in the spring of 2017, after his son Luke was diagnosed with Unilateral Focal Polymicrogyria. The diagnosis came after questions arose about Luke’s inability to crawl or walk, his delays in speech, and the lack of use of his left hand. After reassurance from the pediatrician that Luke was simply right hand dominant and that children learn to walk and speak at different times, Luke began having seizures. His diagnosis immediately followed.
Other than the team of doctors Luke sees regularly, the lack of knowledge, support, and advocacy for Polymicrogyria has encouraged Cody to step in on a larger scale. His hope is to use his experience with nonprofit organizations, partnerships, event coordination, and public speaking to help children and families who have been affected by this disorder and to take the PMG Awareness Organization to new heights.
Natalie Fregoso is our Chief Financial Officer. She began serving on the board in 2014 as Secretary. She is a Legal Assistant for an estate planning law firm, wife and mother of two. Natalie could tell there was cause for concern for her youngest daughter, Gabrielle, when she was only four months of age. The family doctor wasn’t as concerned, but never doubt a mother’s intuition. Natalie kept voicing her concerns and was finally referred to a neurologist. The attentive neurologist immediately agreed with her concerns, did an MRI and Gabrielle was diagnosed with Bilateral Diffused Polymicrogyria in February of 2014. Gabrielle symptoms from the PMG are tonic clonic seizures, cerebral palsy, severe developmental delays, microcephaly, solely G-tube fed and non-verbal. The family is very involved in their church and trust that standing together, and in prayer, we will unlock the mysteries of PMG.
Heather Emory is our Secretary and the proud mother of Colin. Colin was diagnosed with MPPH Syndrome at the age of two. When Colin was born, doctors were very much concerned about the size of his head and the continued growth of it over his first year. Colin began having episodes (that were later determined to be seizures) when he was about six or so months old. He wasn’t hitting some of his developmental milestones by the time he was a year old but had no diagnosis otherwise. His head continued to grow and baffled, their Doctor recommended genetic testing. In January of 2016, it was determined that Colin has MPPH syndrome. Further review of his MRI’s revealed the presence of Polymicrogyria.
Heather is passionate about rare disease awareness and advocacy. She looks forward to connecting families to each other and to the supports they need to help make their journey successful. She is a firm believer in the mission of the organization. Together we will unlock the mysteries of PMG!
Heather joins PMGA with over 15 years of experience in non-profit disability service provider agencies; working in Human Resources and Quality Improvement/Analytics. She is a volunteer Support Parent and Education Advocate for Parent to Parent of New York State. Heather studied Sociology and Business Administration at SUNY College and holds a Bachelor of Arts.