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TSC Talks!

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A podcast for those affected by Tuberous Sclerosis Complex, a rare disease that causes benign tumors to grow in different organs of the body. As a parent of several children affected, I'm interviewing others affected, whether having TSC themselves, a parent or caregiver or healthcare professional, social worker, etc. By hearing other's voices and experiences with managing this disease, we can find better treatments, support each other more effectively, raise awareness of this condition and contribute to finding a cure.

A podcast for those affected by Tuberous Sclerosis Complex, a rare disease that causes benign tumors to grow in different organs of the body. As a parent of several children affected, I'm interviewing others affected, whether having TSC themselves, a parent or caregiver or healthcare professional, social worker, etc. By hearing other's voices and experiences with managing this disease, we can find better treatments, support each other more effectively, raise awareness of this condition and contribute to finding a cure.
More Information

Location:

United States

Description:

A podcast for those affected by Tuberous Sclerosis Complex, a rare disease that causes benign tumors to grow in different organs of the body. As a parent of several children affected, I'm interviewing others affected, whether having TSC themselves, a parent or caregiver or healthcare professional, social worker, etc. By hearing other's voices and experiences with managing this disease, we can find better treatments, support each other more effectively, raise awareness of this condition and contribute to finding a cure.

Twitter:

@talks_tsc

Language:

English

Contact:

6173048518


Episodes

TSC Talks! Part 2-A Discussion on CBD & Cannabinoid Medicine with Mike Robinson, Founder, Global Cannabinoid Research Center

9/18/2019
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"Be the change you want to see in this world" is one of Mike's favorite quotes and his lived experience clearly exemplifies this intention. In this episode, Mike starts off by advising listeners, "Please people, please tell your doctor because there are drug interactions when you're using CBD" and is one of the major takeaways from this episode. In order to educate physicians treating us or our loved ones, it's exceedingly important to form a partnership, be clear about your use of CBD and...

Duration:00:56:16

TSC Talks! Part 1- The CBD & Cannabinoid Conundrum; On Epilepsy & Autism -A Cannabis Love Story with Mike Robinson

9/16/2019
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Mike Robinson, Cannabis Activist, Founder of Global Cannabinoid Research Center, Severe Epilepsy & Cancer Survivor and fascinating human being has much to share. From his bio on https://mikesmedicines.com; "Mike is a multiple Cancer survivor that’s used cannabis oils and CBD extensively as well for severe epilepsy, chronic Lyme Disease, PTSD, and in pain management. Over the last 6 years Mike has shared his journey and analytics on cannabinoid medicine research globally while assisting...

Duration:00:44:03

TSC Talks! WHEN LAW ENFORCEMENT MEETS AUTISM with Ricardo A. Gomez

9/9/2019
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In this episode, precipitated by a Facebook post which caught the attention of many, titled, "When Law Enforcement Meets Autism", Ricardo A. Gomez shared the events occurring in relation to his son Ryan, a young adult with autism, who was with a direct support worker at a local park recently. Said event escalated into PC245, assault with a deadly weapon. Ricardo starts off giving some background on becoming a Law Enforcement Officer in California as well some history of his son Ryan, who...

Duration:00:55:33

TSC Talks! Part 2 with Alexis Minnaar; Living with TSC; Never A Dull Moment. A South African Perspective

9/5/2019
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In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with...

Duration:00:59:56

TSC Talks! Alexis Minnaar, Living with TSC; Never A Dull Moment-A South African Perspective

8/30/2019
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In Part 1 of this two-part episode, Alexis Minnaar, an English and Geography teacher from South Africa, and young adult living with Tuberous Sclerosis Complex shares the process of coming to terms with having TSC and learning how to manage the condition herself. When she left home and entered college, living away from home for the first time and studying and working, she describes feeling overwhelmed with this realization "like I got hit with a ton of bricks". Her system for tracking...

Duration:00:46:32

TSC Talks! "Occupant with Autism" Autism & the Role of Law Enforcement with Chief Joseph Snyder & Officer Phil Kraus, New Paltz, NY PD

8/12/2019
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Chief Joseph Snyder & Officer Phillip Kraus of the New Paltz, NY Police Department discuss their background and experiences with community members that sparked the idea behind their new "Occupant with Autism" sticker. This sticker is a combination of police support & Autism Awareness and can be placed on a car or near the door of a home as a heads up for police that an individual within may be functioning differently. We also discuss feedback they've received thus far on this sticker within...

Duration:00:32:26

TSC Talks! Mark Martin, THE TSC CONNECTOR! 6 State Regional Coordinator, Advocate, Musician & Adult & Parent Living w/TSC

8/11/2019
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Mark Martin is an Adult & Parent living with TSC. He also is the Adult Regional Coordinator of 6 States for the TS Alliance, & was a past Volunteer of the Year. He started a Facebook group for TSC Dads, has worked as an ER Tech, and is an accomplished musician. There is never a dull moment for Mark! He's a true influencer across the community as his perspective as Adult with TSC AND having a son w/TSC gives him a broad perspective and further fires his passion for connecting as many people...

Duration:01:03:54

TSC Talks! An Invitation to Inspiration with Devoted Dad, Husband & TSC Advocate Rob Grandia

8/1/2019
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Rob Grandia is an adult with TSC and father of 3 children affected by TSC. In this episode, he gives an inside look at not only receiving a diagnosis of TSC in his children but also finding out as an adult that he also is affected. We discuss the various manifestations experienced by his children throughout these last 18 years, and how the family was able to find adequate treatment locally. From partial complex seizures as the diagnosing symptom in his oldest daughter to reducing seizures...

Duration:00:50:27

TSC Talks! IDD & Me; "I Wish He Could Talk", on Sibling Impact with Max Piltz, brother to Nicky, with TSC, IDD

7/25/2019
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Max Piltz, brother of Nicky, the inspiration for Nicky's Gardens of Hope, gives his 2 cents on life with a nonverbal sibling who is significantly impacted by Tuberous Sclerosis Complex and Intellectual Disability. Max hits it home with his honest and matter of fact answers to questions posed by his mother, Adriana Piltz, Founder & CEO of Nicky's Gardens of Hope. You will be touched by this short episode highlighting sibling impact, resilience & teamwork. NGOH is a one of a kind, a...

Duration:00:07:43

TSC Talks! "There is No Other Choice" Nicky's Gardens of Hope or Bust, with TSC Mom, Founder & CEO Adriana Piltz

7/24/2019
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Adriana Piltz, is Founder & CEO of Nicky's Gardens of Hope (NGOH). She came on the podcast back in October 2018 to give us an introduction and explanation of this one of a kind project. In this episode she gives us an update, discussing what's happened since we last talked, and why she is even more excited & passionate than ever about this unique opportunity. Speaking from personal experience, having left a wall street career to start this project, Adriana knows that the gaps in the long...

Duration:00:44:29

TSC Talks! Part 2; Are You Listening? "This is Who I Am & This Is What Our Family Is" with Cecilia Pratt

7/23/2019
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In Part 2, Cecilia talks about coping, working out, overcoming a food addiction, feeling like everything is on her shoulders and dealing with burn out. She also discusses getting unsolicited advice, dealing with SSI uncertainties, pharmacy issues and her deep concern for her African American son with challenging TAND behavior issues. "We all come in different shapes & colors" Yet she shares how multiracial issues can be even more challenging when managing a TSC diagnosis. Despite it all, her...

Duration:00:39:14

TSC Talks! Part 1; Are You Listening? Getting Real with Cecilia Pratt, TSC Case Manager & Mom

7/22/2019
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Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore...

Duration:00:38:51

TSC Talks! Hope on the Horizon, Part 2-with Jaye Isham, Master Communicator & VP of Communication Strategy, TS Alliance

7/11/2019
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Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from his work and lived experience in Part 2 of this 2 part episode. A quote that says it all: "Yeah, you know, and I'm very lucky that I allow myself to feel the pain and the heartache and all of those things from the families. I mean, I am never going to truly understand, you know what it's like to have a child with TSC or to have it myself but I have so much empathy, and it's made me such a...

Duration:00:42:33

TSC Talks! Hope on the Horizon, with Jaye Isham, Master Communicator & VP of Communication Strategy, TS Alliance

7/9/2019
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Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from the annals of his lived experience in Part 1 of this 2 part episode you don't want to miss. In his words, "While I want to give your listeners a little insight into what I do, it's more important for them to realize so much hope is truly on the horizon." We cover Jaye's experience of the changing landscape of social media over the years. In a nutshell, Jaye is responsible "for the outward...

Duration:00:48:20

TSC Talks! The Power of TSC Moms; From Gratitude to Grief & Back; 6 Sound Bites.

6/28/2019
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In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times,...

Duration:00:32:19

TSC Talks! Trauma 101-A Preview; For Parents of Medically Complex Kids-with Caroline Clyborne, LPC

6/20/2019
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Caroline Clyborne, LPC gives us the low down on her upcoming webinar, "Trauma 101-For Parents of Medically Complex Kids" on June 25, 2019. Previously on TSC Talks, Episode 27, Caroline gave us an excellent explanation of the different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. In this episode, Caroline gives listeners a review of what trauma is, the various and unpredictable ways we can find ourselves dealing with trauma in TSC, and why it's...

Duration:00:50:51

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

6/19/2019
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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...

Duration:00:55:55

TSC Talks! Dedicated, Dynamic Dena! Part 2; Creation, Implementation & Development of Volunteer Programs at the TS Alliance

6/12/2019
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In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high...

Duration:00:27:20

TSC Talks! Dedicated, Dynamic Dena! Part 1; Her Early Career; Dena Hook, VP of Support Services, with the TS Alliance

6/7/2019
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The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when...

Duration:00:28:17

TSC Talks! The Benefits of Community Connection, Turning the Tables on TSC with Emilie Peters

5/30/2019
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My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching...

Duration:00:52:30