Our 2024 General Education Meeting is returning to Los Angeles on November 2, 2024 at the Sonesta LAX Airport Hotel.

We will be joined by the following speakers:
Elizabeth Roof, M.A.
Tammie Penta, Retired Sergeant
Virginia Kimonis, M.D.
Elena Godfrey, LCSW

Learn more about each presenter below.

Elizabeth Roof, M.A. is a Research Associate at Vanderbilt University Department of Psychology and she currently directs several research programs with children and adults with Prader-Willi syndrome with Elisabeth Dykens.  They have published many peer reviewed journal articles about many aspects of PWS across lifespan. For over 30 years, Elizabeth has followed over 450 children, teens and adults with PWS in longitudinal research studies.  Elizabeth has provided families consultation on issues such as behavioral and classroom intervention, effective parenting, IEP’s and educational strategies, psychiatric medication in PWS, and residential placement and professional consultation for professionals and groups.  She has helped manage 11 clinical trials in PWS and often consults with Sponsors to select appropriate outcomes and manage logistics for clinical trials in PWS.   She has presented at many state and national and International PWS conferences.

Retired Sergeant Tammie Penta worked for the Tucson Police Department where she was a police officer for over 27 years, with the last 20 as a sergeant. Tammie was a detective sergeant for the Elder Abuse Task Force, which included investigations of vulnerable adults, the Child Abuse/Homicide Unit, Special Investigations and Aggravated Assault Unit. Additionally she was the training supervisor responsible for new officers coming into law enforcement and completed her career as the administrative supervisor for the largest division in the city.

Retired Sgt. Penta worked for many years as one of the instructors for the Crisis Intervention Training of officers in Southern Arizona. This training gave officers the tools needed to interact with our developmentally disabled population and also introduced them to Prader-Willi Syndrome. Over the last 20 years, Tammie has provided training to state group homes and families as it relates to law enforcement interaction as well as advocating for families who have had law enforcement involvement in the schools or where arrests have been made on PWS Staff or people with PWS. Retired Sgt. Penta has been on the Prader-Willi Syndrome Arizona Association board since 1996 and has been on the Prader-Willi National Board since 2014. She is the proud mother of Victor who is 29 with PWS.

Dr. Virginia E. Kimonis is a board-certified UCI Health clinician-scientist who specializes in the diagnosis and treatment of children and adults with neuromuscular, neurodegenerative, dysmorphia and other complex disorders.

Her clinical interests include inclusion body myopathy, Paget disease, Pompe disease, frontotemporal dementia, Prader Willi syndrome, morbid obesity and craniosynostosis.

Kimonis earned her medical degree at the University of Southampton Medical School in Southampton, England. She completed a residency in pediatrics at Massachusetts General Hospital in Boston, followed by a fellowship in clinical and biochemical genetics at the National Institutes of Health (NIH) and Children’s National Hospital in Washington, D.C.

The author or co-author of more than 175 peer-reviewed publications in prestigious journals, Kimonis has focused her research primarily on inherited muscle disorders, lysosomal storage diseases, Prader Willi and several other rare disorders.

She also discovered multisystem proteinopathy, a new disease type associated with mutations in the VCP gene that overlaps with Pompe disease. She has received research funding from numerous agencies, including NIH, the Muscular Dystrophy Association, the Paget Foundation and other rare disease foundations.

Kimonis also is a lead investigator with the newly established National Organization for Rare Disor

Elena Godfrey is a clinical social worker who specializes in aging and end of life care. She has spent most of her career working with older adults and family caregivers. Elena is also the proud mother of Sienna Grace who is 18 years old, has PWS and forces Elena to
actually do all the things she tells other caregivers to do.