TSC Talks!22 Mars 2019

TSC Talks; Closing the Deal. with TSC Mom, Blogger & TSC Advocate Heather Lens as She Turns No to Yes in Congress & Life

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK.
She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

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Avsnitt(155)

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TSC Talks 3.0 Research~Episode 9

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TSC Talks 3.0 Research~Episode 8

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15 Apr 30min

TSC Talks 3.0 Research~Episode 7

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8 Apr 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 Apr 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 Mars 28min

TSC Talks 3.0 Research~Episode 4

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18 Mars 30min