TSC Talks!

Jill Woodworth
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TSC TALKS 2.0. Inspired by the condition Tuberous Sclerosis Complex. Providing digital audio & video content and products designed to educate, illuminate, support and advocate "off the grid" alternative and holistic options for marginalized populations. Providing a forum for communication, collaboration, resources and opportunity. Drawing from lived and learned experience All with the goal of coming together to affect change, bridge gaps and empower as we come together to better understand each other's predicament and validate the need for access, affordability that often keep those with chronic, life threatening conditions from exploring options. Options that CAN open the doors of perception to understanding our exceptional variability as human beings and the “one size fits all” aspects of traditional medicine that are not conducive to bio-psycho-social health, stability and longevity. Come join us as we dig deep into issues and concepts that need to be given some thought and discussion in order to truly “walk a mile” in another’s shoes! Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

  1. TSC Talks 3.0 Research~Episode 6

    2天前

    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 rare diseases on hefty meds and how this relates to the cultivated biosphere that limits the full potential of the divine human. So many the templates for data and experimentation to build the current Healthcare 4.0 system and Precision Medicine. While many will be helped, there will be a dependence on the grid system. YouTube Video: https://youtu.be/OqLKIZ7Q54s?si=8svWmKHp4ekiFOnR Links: https://www.liebertpub.com/doi/10.1089/crispr.2024.0079  https://pubmed.ncbi.nlm.nih.gov/39654514/  https://pediatricsnationwide.org/2024/01/11/innovative-gene-therapy-approach-for-treating-patients-with-tuberous-sclerosis-type-2/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7793581/  https://innovativegenomics.org/news/crispr-clinical-trials-2026/ https://frontlinegenomics.com/sickle-cell-disease-a-2024-update/ epidiolexhcp.com  nih.gov  sciencedaily.com  https://www.researchgate.net/publication/348347376_Gene_therapy_for_tuberous_sclerosis_complex_type_2_in_a_mouse_model_by_delivery_of_AAV9_encoding_a_condensed_form_of_tuberin globalgenes.org neurologylive.com berkeley.edu ccf.org Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    32 分钟
  2. TSC Talks 3.0 Research~Episode 5

    3月25日

    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 new technology, and my theories with documentation of why this is happening. I also go over some of the "no touch" technologies being rolled out and tested on those with diseases such as TSC where the nature of the genetics, a "monogenic" disorder, makes it a more suitable population to experiment on to gain information than other more common disorders, such as Alzheimer's, which involve 100s of genetic factors.  TSC population is kept in that "test bunny" role without ever addressing the external factors that make the disease more difficult to manage in the first place. LINKS: pmc.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov https://pmc.ncbi.nlm.nih.gov/articles/PMC7672342/ https://cdmrp.health.mil/tscrp/default http://tuberous-sclerosis.org/research/tsa-funded-research/ https://www.mdpi.com/2075-1729/15/3/368 https://www.tscalliance.org/wp-content/uploads/2023/02/Training-Packet-Documents.pdf https://pmc.ncbi.nlm.nih.gov/articles/PMC3010088/ https://pmc.ncbi.nlm.nih.gov/articles/PMC4527140/ https://pubmed.ncbi.nlm.nih.gov/19028034/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6851053/ https://www.youtube.com/watch?v=hXRRq-dFuYg https://www.youtube.com/watch?v=Hu2TvhhdEHY https://www.youtube.com/watch?v=BFuXttZspaY https://pmc.ncbi.nlm.nih.gov/articles/PMC5727703/ https://globalgenes.org/raredaily/transforming-tsc-epilepsy-with-a-precision-therapy/ https://pediatricsnationwide.org/2024/01/11/innovative-gene-therapy-approach-for-treating-patients-with-tuberous-sclerosis-type-2/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3164024/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11944049/ https://www.biorxiv.org/content/10.1101/2024.02.22.581652v1.full-text https://pmc.ncbi.nlm.nih.gov/articles/PMC6408922/ https://www.mdpi.com/2076-3417/14/3/1132 https://pmc.ncbi.nlm.nih.gov/articles/PMC3744999/ https://www.researchgate.net/publication/24217930_Magnetically_Responsive_Nanoparticles_for_Drug_Delivery_Applications_Using_Low_Magnetic_Field_Strengths https://pmc.ncbi.nlm.nih.gov/articles/PMC2933363/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7998448/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9230665/ Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    29 分钟
  3. TSC Talks 3.0 Research~Episode 4

    3月18日

    TSC Talks 3.0 Research~Episode 4

    TSC Talks 3.0 Research, Episode 4 Here'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 range of knowledge about what impacts the genome such as environmental (vaccines included) amplifications so they can justify the need for gene therapy via crispr, etchttps://rarediseases.org/about-us/financials-governance/ https://rarediseases.org/collection/nord-financials/ https://rarediseases.org/nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades/ https://rarediseases.org/nord-state-report-card/ rarediseases.org https://rarediseases.org/wp-content/uploads/2022/10/NORD_2020_Annual-Report_wFinancials.pdf https://rarediseases.org/wp-content/uploads/2022/01/NORD_2020_Annual-Report_FINAL_SpreadView_web.pdf https://rarediseases.org/wp-content/uploads/2022/10/NRD-1198-2019_Annual-Report_FNL_WebSize.pdf https://www.eurordis.org/who-we-are/our-funding/ https://www.eurordis.org/who-we-are/projects-and-partnerships/ https://www.eurordis.org/partnerships/ https://www.eurordis.org/get-involved/join-the-eurordis-round-table-of-companies/ https://www.eurordis.org/publications/eurordis-policy-on-financial-support-by-commercial-companies-2/ https://www.eurordis.org/our-priorities/research/ https://www.eurordis.org/eurordis-supports-member-states-efforts-operating-grants-reintroduction/ https://www.eurordis.org/videos/rare-but-real-talking-rare-diseases-part-1-6/ download2.eurordis.org vzacna-onemocneni.cz https://everylifefoundation.org/rare-hub/rare-hub-partners-current-1-3/ https://everylifefoundation.org/financial-support/ https://everylifefoundation.org/everylifeeveryaction/ https://everylifefoundation.org/sitemap/ https://everylifefoundation.org/wp-content/uploads/2025/08/ELF-AnnualReport-2024-8.5x11-Proof-v6-081225.pdf https://everylifefoundation.org/wp-content/uploads/2022/01/Guide-to-Patient-Involvement-FINAL-COMPLETE-GUIDE-Rev.pdf https://everylifefoundation.org/wp-content/uploads/2016/05/Industry-Brochure-FINAL-May-2016.pdf Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    30 分钟
  4. TSC Talks 3.0 Research~Episode 3

    3月14日

    TSC Talks 3.0 Research~Episode 3

    Episode 3 of TSC Talks 3.0 Research I drill down with the AI on the reality of what is happening in the rare disease expanse. The full expanse it's not explored we are jumping right into gene editing, like using whiteout, it isn't quite the same. It's a closed loop system. That is for sure. links: https://www.ninds.nih.gov/health-information/disorders/tuberous-sclerosis-complex# https://pmc.ncbi.nlm.nih.gov/articles/PMC7672342/ https://www.ncbi.nlm.nih.gov/books/NBK1220/# https://patienteducation.asgct.org/understanding-cell-gene-therapy/ethical-issues-germline-gene-editing# https://pmc.ncbi.nlm.nih.gov/articles/PMC12103018/# https://pubmed.ncbi.nlm.nih.gov/6873497/# https://pmc.ncbi.nlm.nih.gov/articles/PMC6277505/# https://www.researchgate.net/publication/326455213_Incidence_of_tuberous_sclerosis_and_age_at_first_diagnosis_new_data_and_emerging_trends_from_a_national_prospective_surveillance_study https://pmc.ncbi.nlm.nih.gov/articles/PMC11944049/# https://www.slu.edu/law/health/blog/2024/vence-bonham-dss.php# https://tuberoussclerosiscenter.wustl.edu/about-tsc/causes/# https://www.ncbi.nlm.nih.gov/books/NBK535878/# https://pmc.ncbi.nlm.nih.gov/articles/PMC5524257/# https://pmc.ncbi.nlm.nih.gov/articles/PMC5100696/# https://link.springer.com/article/10.1007/s11569-025-00479-8# https://www.ncbi.nlm.nih.gov/books/NBK535877/# https://pmc.ncbi.nlm.nih.gov/articles/PMC11306935/# https://pmc.ncbi.nlm.nih.gov/articles/PMC10338708/ https://www.thehastingscenter.org/genetic-therapies-for-rare-diseases-developing-ethical-regulatory-policies/# https://med.nyu.edu/departments-institutes/population-health/divisions-sections-centers/medical-ethics/education/high-school-bioethics-project/learning-scenarios/jesse-gelsinger-case https://www.cliffsnotes.com/cliffs-questions/5224266# https://www.bstquarterly.com/article/using-synthetic-biology-to-create-therapeutic-solutions/# https://www.sciencedirect.com/science/article/pii/S1359644621001574 https://www.sciencedirect.com/science/article/abs/pii/S1359644621001574# #raredisease #TuberousSclerosisComplex #GeneEditing Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    24 分钟
  5. TSC Talks 3.0 Research, Episode 2

    3月3日

    TSC Talks 3.0 Research, Episode 2

    ​Episode 2 of ongoing research on Tuberous Sclerosis Complex based on the query~Is CRISPR CAS9 being researched to help/cure tuberous sclerosis?" An exchange with Google AI mode in reference to the above query with the intention of making it clear the trajectory for those with rare diseases in terms of overriding our biological organic template and moving towards a more synthetic version. I picked up where I left off with Episode 1 and talk through Epigenetic "Switches", Gut-Brain Axis and Neuroinflammation, Why Researchers Are Skipping These Links, Potential Reasons for the Research Focus, Funding and Corporate Partnerships, Neuroinflammation Research, The "TAND" Project (TSC-Associated Neuropsychiatric Disorders), The PREVENT Trial, Basic Science and "Somatic Mosaicism", The "Funding Gap" regarding Conflicts of Interest, The Logic of the "Omission", Lived Experience vs. "Proven" Science,Why It Feels "Diabolical" & Finding the "Clean" Data https://www.mdpi.com/1422-0067/22/14/7273 https://pmc.ncbi.nlm.nih.gov/articles/PMC11275973/ https://www.ncbi.nlm.nih.gov/books/NBK206940/ https://www.nature.com/articles/s41398-024-02752-y https://clinicaltrials.gov/study/NCT01289912 https://pmc.ncbi.nlm.nih.gov/articles/PMC9253752/ https://www.intechopen.com/chapters/82669 https://pmc.ncbi.nlm.nih.gov/articles/PMC6748183/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6278824/ https://www.nature.com/articles/s41439-022-00181-1 https://pmc.ncbi.nlm.nih.gov/articles/PMC3035853/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5804531/ https://pubmed.ncbi.nlm.nih.gov/40558831/ https://docs.google.com/document/d/1ncDHvfDHkzVd1-H4Xgulz-mhSZxhwhydK6jWln90L5E/ (contact pjlacy6@gmail.com for access) Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    24 分钟
  6. TSC Talks 3.0 Research~Episode 1

    3月2日

    TSC Talks 3.0 Research~Episode 1

    "Is CRISPR CAS9 being researched to help/cure tuberous sclerosis?" An exchange with Google AI mode in reference to the above query with the intention of making it clear the trajectory for those with rare diseases in terms of overriding our biological organic template and moving towards a more synthetic version. For many this will bring great relief as these rare diseases are challenging for affected and the ripple created in the realm. Instead of considering ALL the factors that have exacerbated and amplified rare diseases to the point of no return, our powers that be are forging ahead with gene therapy, at the germline. This disease is a data generator, and the affected population a perfect test template for gathering the intel needed , organ by organ to duplicate and integrate with the tech. No judgement, just sharing the conversation as I feel it's important to share these exchanges with the body of knowledge currently feeding the AI. https://youtu.be/lZKqFZWnp0c Here's a link to the queries. https://share.google/aimode/mwKaYPnKgzw54cs76 Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    25 分钟
  7. TSC Talks Revival!! JUSTIN LESLIE of Project Whistleblower ~ Truth Under Fire

    2024/03/18

    TSC Talks Revival!! JUSTIN LESLIE of Project Whistleblower ~ Truth Under Fire

    This is a special edition, TSC Talks Revival episode with Justin Leslie! Justin is an ex-Pfizer scientist and whistleblower. Justin was also one of my first guests on my podcast "TSC Talks" in 2018, (https://bit.ly/3Iz0FUU) where he shared his story about his experience with diagnosis and living with TSC.   In "Project Whistleblower" Justin shares his personal journey, including living with Tuberous Sclerosis Complex (TSC), a condition that not only shaped his childhood but also inspired him to pursue a career in pharmacology, aiming to find a cure for his condition. During his time as a vaccine scientist at Pfizer, Justin began to collaborate undercover with Project Veritas. This partnership led to the revealing of mind blowing revelations about the COVID-19 ‘scamdemic’ and other alleged misconduct within Pfizer. However, he soon started to observe concerning behaviors within Project Veritas, such as the suppression of timely truths and vaccine concerns. These observations led him to question the integrity of the organization and its founder, James O’Keefe. In collaboration with Marty Leeds, Justin has produced the compelling documentary “Project Whistleblower.” This film delves into his experiences and his growing awareness of the covert tactics and manipulations at Pfizer, Project Veritas, and OMG Media Group. In an era rife with lies and deception, the documentary underscores the revolutionary act of truth-telling." (credit to Amanda Vollmer: https://yummy.doctor/video-list/advocates-for-truth-amandha-vollmer-adv-with-justin-leslie/) Contact info for Justin! Justin Leslie: https://justintegrity.net/ Justin’s Linktree: https://linktr.ee/justinleslie Contact: justinleslie3@protonmail.com Donate to Justin's work: https://www.givesendgo.com/ProjectWhistleblower WATCH THE DOCUMENTARY HERE:  https://justintegrity.net/project-whistleblower/ Produced by: https://linktr.ee.com/jillwoodworth https://jillwoodworth.com Short clip produced by @jillwoodworth https://jillwoodworth.com Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    1 小时 46 分钟
  8. TSC Talks! Final podcast~Wrapping it Up & Thanks

    2022/06/23

    TSC Talks! Final podcast~Wrapping it Up & Thanks

    Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care. Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home. Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

    25 分钟
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关于

TSC TALKS 2.0. Inspired by the condition Tuberous Sclerosis Complex. Providing digital audio & video content and products designed to educate, illuminate, support and advocate "off the grid" alternative and holistic options for marginalized populations. Providing a forum for communication, collaboration, resources and opportunity. Drawing from lived and learned experience All with the goal of coming together to affect change, bridge gaps and empower as we come together to better understand each other's predicament and validate the need for access, affordability that often keep those with chronic, life threatening conditions from exploring options. Options that CAN open the doors of perception to understanding our exceptional variability as human beings and the “one size fits all” aspects of traditional medicine that are not conducive to bio-psycho-social health, stability and longevity. Come join us as we dig deep into issues and concepts that need to be given some thought and discussion in order to truly “walk a mile” in another’s shoes! Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

信息

  • 创作者
    Jill Woodworth
  • 活跃年份
    2018年 - 2026年
  • 单集
    20
  • 分级
    儿童不宜
  • 版权
    © Copyright Jill Woodworth
  • 节目网站
    TSC Talks!