TSC Talks!6 Huhti 2019

TSC Talks! Living It; Giving Everything But Up! Lauren Shores Shillinger, TSC Mom, Advocate & a TS Alliance Volunteer of the Year

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

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Jaksot(155)

TSC Talks 3.0 (not) Research ~ In the Stone Chamber

Taking a break from the harsh closed loops and hunkering down in dis stone chamber to give a little freestyle riff for this episode from the stone chamberno links except go watch the video. the audio ...

6 Touko 3min

TSC Talks 3.0 Research~Episode 10

I bust through the third wall or whatevs in Episode 10 of TSC Talks 3.0 Research. Dropped the whiteboard til the end. Summed up the 9 episodes and added a bit on the end about CPTSD, TAND and the fact...

29 Huhti 35min

TSC Talks 3.0 Research~Episode 9

In this episode, I get into mitigation strategies related to the increasing reliance on tech with the arrival of 6G particularly for those living with a chronic and or rare disease that is on multiple...

22 Huhti 36min

TSC Talks 3.0 Research~Episode 8

Episode 8 of TSC Talks 3.0 Research... continuing on with the extensive history of the rare disease Tuberous Sclerosis Complex, the set up for data harvesting and gene editing and the inevitability of...

15 Huhti 30min

TSC Talks 3.0 Research~Episode 7

The history of Tuberous Sclerosis Complex.they're juicing it.Some queries related to the complexity of epigenetic variables and the overlords decision to focus on genetics only for the sake of "simpli...

8 Huhti 33min

TSC Talks 3.0 Research~Episode 6

In Episode 6 of TSC Talks Research 3.0, I finish up the discussion of CRISPR and TSC and the trajectory, I get into cannabis and the way they've deglimmered exploration of consciousness for those with...

1 Huhti 32min

TSC Talks 3.0 Research~Episode 5

In this episode I share information on the risks and side effects of CRISPR for individuals with TSC and in general as well as go into how those affected with TSC are "test bunnies" for much of this n...

25 Maalis 28min

TSC Talks 3.0 Research~Episode 4

TSC Talks 3.0 Research, Episode 4Here's my ongoing convo with AI delving into the funding behind rare disease research, non profits and how there are vested interests in continuing to bypass the full ...

18 Maalis 30min