Board of Directors and Executive Advisory Board

Robin Hudson is our President. She is a proud stay-at-home mom to Sean. Sean was diagnosed with Microcephaly in utero but it wasn’t until age three that they learned that he also had PMG. Through all the struggles and unanswered questions about his future, Robin has come to know that Sean is the living proof that there is hope! Robin comes to us with experience in working with a nonprofit organization. She is truly dedicated to raising awareness of this disorder and finding ways to help other children and families who have been, or will be, diagnosed in the coming days. Robin is honored to be serving on the PMGA Board. Robin believes that, “TOGETHER we WILL unlock the mysteries of PMG”! Robin Face shot
Natalie C. Fregoso is our Vice President and Treasurer. She began serving on our 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 4 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 Diffuse Polymicrogyria in February of 2014. Gabrielle suffers from hypotonia, developmental delay,  microcephaly and absence seizures. The family is very involved in their church and trust that standing together, and in prayer, we will unlock the mysteries of PMG. natalie Fregoso photo.eml
Tara Bohle is our Director of Advocacy.  She has a background in Retail Merchandising and Marketing, but is now home with her 2 children.  She also has an extensive educational background including a Masters Degree in Business Management.

Her youngest, Evan, was diagnosed with CBPP at 18 months.  After his diagnosis, she had a desire to do more.  Currently, she serves on the Board at Colorado Children’s Hospital where she creates programs and educates doctors and families about Rare Diseases.  She is also on the Board for the Family Support Council for Rocky Mountain Human Services.  It is on this board where she focuses on providing programs and resources for special needs children and their families after the age of three.  Besides her involvement in these 2 organizations, she teamed up with NORD (National Organization for Rare Diseases) and two moms in 2016 to host Colorado’s 1st Rare Disease State Event.  Tara has enjoyed her advocacy work and is so excited to continue her work with the PMG Awareness Organization in bringing even more awareness to this disorder.  She feels that together we can make a change and give PMG patients a voice.

 Tara Headshot for website
Lindsay Latham is our Secretary and Co-Chair for the Director of Advocacy position.  Lindsay has been active in advocacy work through her career in the theatre for over 10 years. She is very excited to bring that passion to PMG Awareness Organization and hopes to not only help bring a voice to our families, but also help guide them in finding their own voice.  Lindsay is passionate about reaching out to our local communities  and working with our leaders to make sure that the special needs community is heard and being represented.  Lindsay became active with PMG Awareness Organization after her son was diagnosed with Bilateral Frontoparietal Polymicrogyria in June of 2015 at the age of 14 months old, currently with no known cause. He is an incredibly amazing little boy.  With the help of a huge support team, he is making great strides every day. In addition to being on the PMG Board, she is also working with other special needs families to start a Special Education PTA for the county of Fairfax, VA.

 

 

 Lindsay Latham Headshot[1778120]

Medical Advisory Board

Dr. Anthony A. Perszyk, Assistant Professor, Pediatrics – University of Florida, College of Medicine. Dr. Perszyk comes to us with over 27 years of experience as a physician. He is Board Certified in both Genetics and Pediatrics. He completed his Fellowship in Genetics at the University of Washington School of Medicine in Seattle, Washington. Dr. Perszyk’s vast experience and desire to assist those affected by PMG, both present and in the future, will be a tremendous asset to our organization.
Dr. Jason T. Lerner, Assistant Professor and Director of Training for Child Neurology at the Mattel Children’s Hospital at UCLA, David Geffen College of Medicine.  Dr. Lerner is board certified in Neurology with Special Qualifications in Child Neurology and board certified in Clinical Neurophysiology.  He completed his pediatric residency at the M.S. Hershey Medical Center at Penn State University, child neurology residency at Montefiore Medical Center, Albert Einstein College of Medicine and pediatric epilepsy/clinical neurophysiology fellowship at the Mattel Children’s Hospital at UCLA, David Geffen College of Medicine.Dr. Lerner currently practices in a large academic institution and sees children with various neurological conditions.  He specializes in epilepsy, headache and traumatic brain injury.   His current research involves posttraumatic epilepsy, epilepsy surgery and neurointensive care.  Additionally he is the residency training director for child neurology at UCLA.  
Nicole Cobo, MD is a Pediatric Epilepsy Fellow at the University of California, Los Angeles where she is trained to read and interpret electroencephalograms and video telemetry in both inpatient and outpatient settings, including monitoring in the neonatal and pediatric intensive care units.  A significant portion of her time is spent in evaluating patients for epilepsy surgery including interpreting telemetry recordings, various imaging modalities, and intraoperative electrocorticography.  Dr. Cobo follows patients in her Epilepsy Clinic and also participates in research projects assessing the use of neurostimulation techniques for the treatment of refractory epilepsy.