TSC Talks! Part 3-It's a Wrap. TAND, TANDem, ETC; with Dena Hook, VP of Support Services, TS Alliance

In Part 3 of this three-part series with Dena Hook, VP of Support Services at the TS Alliance, what I want to highlight in this description is our discussion of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND). "TAND describes the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilves
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