Vice President Support Services TSAlliance

Ms Dena Hook

Tuberous Sclerosis Alliance, USA

Dena Hook is the Vice President of Support Services for the TS Alliance in America.  She has been an educational advocate for over 30 years. She worked as the Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years, training educational advocates throughout the country. Dena worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 1997.  She is a published author through Incentive Publication authoring “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addition Program for Marion County in Ohio. She is certified as a Special Education Mediator through the Juvenile Justice Center of Atlanta and certified in Mediation through the Ohio Supreme Court. 

During her thirteen years as Vice President of Support Services for the Tuberous Sclerosis Alliance she developed six support services programs and numerous publications supporting families and individuals living with TSC. She personally provided support services in helping parents of children with TSC navigate the multitude of challenges related to school issues, such as helping them navigate the  Individualized Education Program (IEP) process, educating teachers about the unique needs of students with TSC, building a paper trail, writing a variety of resource publications, attending school meetings with parents/caregivers. 

Dena developed the Educator Mentor Program (EPM) program, which provides peer to peer supports in understanding parent’s rights and how to be an educational advocate for their children. This program also supports building relationships between parents/caregivers and school districts for better outcomes for children. She developed an Educator Mentor Program (EMP) made up of administrators, therapists, physiologists, and teachers from pre-kindergarten to college level having experience with TSC. Together these two programs provide one-on-once support to any family or professional in school systems needing education and support in understanding the educational complexities of TSC. She has written publications related to TSC-Associated Neuropsychiatric Disorders (TAND) specific to education and a parent guide to understanding TSC and behavior.

She developed the Adult Regional Coordinator Program (ARC) to provide peer to peer support to adults living with TSC. She launched a peer support program called the Department Adult Transition Resource Coordinators (DATRC). This program supports dependent young adults with TSC and their parents to have somewhere to turn particularly related to transition issues once they turn age of majority. During her time at the TS Alliance she has grown the TS Alliance TSC peer to peer support program (TSC Connect Network) to over 408 volunteers across the US. Dena along with the Jo Anne Nakagawa theTS Alliance Director of Clinical Projects and TSC Clinic Liaison developed and supported the TSC Clinic Ambassador Program (TSCCA) to support newly diagnosed families with peer to peer support within the TSC Clinics across the US.

Dena was a member of the TAND consortium in year 1 of the TANDem project.

TANDem Cluster Group

Working Group

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