TSC Talks!
148 episodes - English - Latest episode: 4 months ago - ★★★★★ - 5 ratingsTSC 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!
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Episodes
TSC Talks! Part 2-A Rock and a Hard Place~Jadyn's Journey, with Liz Minda, R.N. & Mike Robinson, Founder, Global Cannabinoid Research Center
April 11, 2020 11:02 - 47 minutes - 43.3 MBIn Part 2 of this episode of TSC Talks, I spoke to Liz Minda, RN and Mike Robinson, former TSC Talks guest, drops in for the second half of our conversation. Liz has three children, one of whom has significant special needs and issues related to epileptic seizures. Liz strongly believes her daughter’s issues are pharma injuries and we discuss that and the treatment protocol. Liz had her children later in life; her son was born when she was 48 and her twin daughters were born when she was 5...
TSC Talks! Part 1: A Rock and a Hard Place~Jadyn's Journey with Epilepsy & More with Liz Minda, R.N.
April 09, 2020 20:22 - 32 minutes - 29.4 MBIn this episode of TSC Talks, I spoke to Liz Minda, RN and Mike Robinson, former TSC Talks guest, drops in for the second half of our conversation. Liz has three children, one of whom has significant special needs and issues related to epileptic seizures. Liz strongly believes her daughter’s issues are pharma injuries and we discuss that and the treatment protocol. Liz had her children later in life; her son was born when she was 48 and her twin daughters were born when she was 50. She ha...
TSC Talks! The State of Birth-Before & During COVID-19 with Corrine Pellard, Jodi Chapin & Jessica Petrone
April 03, 2020 12:00 - 50 minutes - 46.3 MBI had the honor of speaking to three accomplished women about the current state of birth both locally and nationally. We discuss the increasing interest in home births, the advantages and disadvantages of home versus hospital births and how those expecting, or expecting to be expecting, can best prepare especially with the extra consideration of Covid19. Corrine Pellard is an Empath, Psychic Medium and Reiki Master. She is also a mom of two and tells us about her experience of both a ho...
TSC Talks! Love over Fear~A Mother's Story. Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group
March 29, 2020 12:43 - 43 minutes - 39.9 MBIn this episode, my guest Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group, came on the podcast to share a powerful and inspiring mother son story that follows the timeline from receiving a diagnosis at birth of her son Nicholas with Branchio-Oculo-Facial Syndrome through current day. Sherri gives one of the most powerful illustrations over the course of the episode, of a mother's love, courage, compassion, resilience and tenacity that I've ever heard, and is a fantastic example of ...
TSC Talks! A Coronavirus/COVID19 Conversation with Dr. Uma Dhabalanan. MD. MPH. FAAFP. MRO. CMS
March 29, 2020 10:22 - 34 minutes - 31.3 MBHere is the audio version of the Facebook Live episode that aired on March 26, 2020. The YouTube link for the video is as follows: https://youtu.be/cIp6BinWD6c In this episode, Dr. Uma joined host Jill Woodworth on TSC Talks Facebook page to engage in a discussion on the impact of #Coronavirus/ #COVID19 We'll talk about the personal impact, local impact in MA on the cannabis community, and beyond MA, Info on symptoms, knowing when to stay home and when to contact a doctor, what we can do t...
TSC Talks! Healer Vs. M.D. with Mike Robinson, Cancer Survivor/Cannabis Activist - Founder, Global Cannabinoid Research Center
March 20, 2020 13:13 - 49 minutes - 45.6 MBMike Robinson, Cancer Survivor/Cannabis Activist - Founder, Global Cannabinoid Research Center, comes on to discuss some of the current challenges in the cannabis community as well as exciting opportunities and projects coming your way. He starts off answering the initial question regarding who is reliable and trustworthy in the industry, we delve into challenges with cannabis certifications, the misperceptions surrounding the term "healer" and the lack of respect and credibility, and why th...
TSC Talks-SPECIAL EDITION: CORONAVIRUS with Mike Robinson~Cancer Survivor/Cannabis Activist - Founder, Global Cannabinoid Research Center
March 16, 2020 12:34 - 27 minutes - 25.3 MBMike Robinson, Cancer Survivor/Cannabis Activist - Founder, Global Cannabinoid Research Center, comes on to discuss a recent experience he had with the Coronavirus situation, his concerns over the gravity of this situation and the impact it's having on everyone's mental health. He urges the cannabis industry as a whole to rise up during this time and consider the cannabinoids which in combination have huge potential to make an impact on our immune systems. It is time to come together in unit...
TSC Talks! Cannabis is Personalized Medicine with Ruth D. Fisher, Ph.D., Author, "The Medical Cannabis Primer"
March 08, 2020 13:13 - 1 hour - 65.7 MBI thoroughly enjoyed having Ruth Fisher, Ph.D., Cannabis researcher, and analyst, Co-Founder of Cann Dynamics, as well as the author of The Medical Cannabis Primer, on TSC Talks! I heard about Ruth’s book from another recent guest, Nikki Lawley and promptly ordered it, and reached out to Ruth for an interview. It’s a phenomenal resource, one that I have on my desk and refer to frequently. Before I launch into the episode notes, here’s a great description of the book written by Dan Larkin, ...
TSC Talks! Calming the Chaos with Brooke Alisha~TSC/TAND Advocate, Adult/Parent Living with TSC, Hair Stylist, Thriver!
March 01, 2020 13:34 - 51 minutes - 46.9 MBI had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope. Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “...
TSC Talks! Tyrone Williams; Respect & Redemption-Growing Up Fast In The Cannabis Industry
February 21, 2020 14:19 - 41 minutes - 38.4 MBTyrone Williams is a Proud Father👣 Direct From Source Supplier🌿Licensed THC and Hemp Product Acquisition and Quality Control Specialist🤔Problem Solver. This is his story of life in the fast lane in the early days of the cannabis industry in Southern California. Tyrone grew up with a father involved in some of the riskier smuggling operations in the industry, his uncle being killed by the cartel and his mother as a beacon of safety and strength. In this episode, Tyrone walks us through the t...
TSC Talks! Michael Pedersen, Cannabis in Canada, Cannabis Update Podcast & More
February 15, 2020 10:14 - 39 minutes - 36.2 MBIt was my pleasure to have Michael Pedersen is Host/Producer of Cannabis Update Podcast, Founder of Distinct Media as well as Station Manager of Multicultural Broadcasting Corporation, Inc. in Calgary Alberta. “Michael has worked in broadcasting and managed radio stations since 2005. Before radio, he worked in the Vancouver film industry as a post-production editor and location sound recordist. He has produced an estimated 7000 audio commercials for radio along with countless jingles, sting...
TSC Talks! Trailblazers! Nadia Bodkin, CEO & Vincent Crowley, SVP of Blaze Therapeutics, LLC
February 08, 2020 12:13 - 1 hour - 55.3 MBNadia Bodkin, CEO and Vincent Crowley, SVP of Blaze Therapeutics, LLC are an incredible team bringing a rich and relevant background of lived and learned experience across multiple special interest groups, including the rare disease community, military & veteran community, as well as health care community and more. "Blaze Therapeutics exists to offer plant-based solutions to the rare disease, the US Veteran, and professional medical communities that target the improvement of overall healt...
TSC Talks! Canna Combo Mini Pod~With Blaze Therapeutics, Michael Pedersen, Tyrone William & Mike Robinson 🎉
January 31, 2020 14:15 - 12 minutes - 11.5 MBA mini compilation of a few Canna conversations; Blaze Therapeutics, Michael Pedersen, Tyrone Williams & past guest Mike Robinson. 1-"Blaze Therapeutics exists to offer plant-based solutions to the rare disease, the US Veteran, and professional medical communities that target the improvement of overall health, wellness, and quality of life. We believe in amplifying the beauty of life through the pursuit of wellness. Blaze Therapeutics, Nadia Bodkin-Rare Disease Advocacy Professional, Execut...
TSC Talks! "10 and Ace Despite It All" On TBI, with Nikki Lawley, Former Pediatric Nurse, TBI survivor, Cannabis Patient
January 24, 2020 12:34 - 58 minutes - 53.3 MBNikki Lawley is a former pediatric nurse, former blackjack dealer and much more, who went from a full active life to chronic daily pain and other debilitating symptoms after suffering a traumatic brain injury on the job in 2016. This is the story of how it happened, what happened and how she's been able to move from existing in survival mode to having a life filled with hope despite ongoing challenges. In her own words; "since my (TBI) injury, one of the things that I've learned more than an...
TSC Talks! No Holds Barred~Advocate Extraordinaire! Daniel Price~TSC, Rare Disease, Adoption & LGBTQ Advocate
January 17, 2020 12:37 - 36 minutes - 33.2 MB“You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin. This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He...
TSC Talks! Tiffani Goff Unplugged. Author of Loving Tiara: Memoir~"Mom, Wife, Interior Decorator, Chronic Volunteer"
January 10, 2020 12:24 - 1 hour - 57.9 MBI was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoir on the podcast. I followed Tiffani’s journey with her daughter Tiara who had TSC for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of w...
TSC Talks! O Pioneer! on Assistive Technology, with RJ Cooper, CEO and Founder at RJ Cooper & Associates, Inc.
January 03, 2020 11:26 - 47 minutes - 43.8 MBR.J. Cooper, Founder & CEO of R.J. Cooper & Associates is an inventor, technologist, and student of human behavior. RJ has always carried with him the goal of wanting to help as many people as possible. His interest in the area of assistive technology began over 30 years ago when he was studying to become an electrical engineer at the University of Utah. In his own words: I love what I do because my products make a tangible impact on the lives of the users by unlocking their hidden capabil...
TSC Talks! Persistance Pays Off with Ricardo E Rivera Acevedo, Ph.D, Cannabinologist, Professor, Podcaster & Entrepreneur
December 26, 2019 14:43 - 51 minutes - 47 MBIn this episode, my guest is Ricardo Rivera-Acevedo, Chief Science Officer and Director at Ecovita Health Corporation, Vancouver, British Columbia, Canada working to initiate and manage a medical cannabis extraction facility and guide research and development of new therapeutic products. Ricardo is host of the Cannabis Science Podcast, the first weekly Canadian radio show focused entirely on cannabis and he is also a Scientific Consultant at ACGT, where he works to provide the skill and knowl...
TSC Talks! In the Hot Seat with Professor Petrus de Vries & Alexis Minnaar; A Discussion on TSC Assoc. Neuropsychiatric Disorders, aka~TAND
December 19, 2019 12:11 - 59 minutes - 54.2 MBIn this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuber...
TSC Talks! Full Circle; Farming to Finance~Cancer & Cannabis w/Jon Workman, VP Industrial Hemp Business Dev. at American Cannabis Co.
December 14, 2019 11:42 - 45 minutes - 41.9 MBJon Workman is Vice President - Industrial Hemp Business Development at American Cannabis Company and President - Arkansas Hemp Assoc. He has had a long career in the industry, starting out growing up on a farm in Arkansas, getting into the finance industry in California, having much success, then a random snowboarding accident revealed he had multiple myeloma. Given 3 years to live, he was hit with another disease called TTP ( Thrombotic Thrombocytopenic Purpura). He shares, "I was in the h...
TSC Talks! Tiffany Watkins, Cannabis Activist, Enthusiast, Founder of Lady Canna
December 10, 2019 11:21 - 34 minutes - 31.9 MBTiffany Watkins is a "Cannabis Enthusiast". She's been an activist for 20+ years and has done a lot of work to bring awareness to health care and proper distribution of Medical Cannabis as well as paving the way for Recreational Cannabis. She has marched the Capital (CA), to help bring a voice to those in need of the protection of the Compassionate Care Act. Additionally, she has attended and spoken at City Council meetings and delivered talks as a keynote when invited. She states, "Canna...
TSC Talks! Endocannabinoid Egalitarian & Expert! Dr. Uma V.A. Dhanabalan MD. MPH. FAAFP. MRO. CMS
December 06, 2019 19:35 - 55 minutes - 50.6 MBDr. Uma Dhanabalan is Founder/CEO, Global Health & Hygiene Solutions LLC, Uplifting Health & Wellness, Natick, MA. "She is a highly respected physician trained in Family Medicine, Occupational & Environmental Medicine, specialized in heavy metals, a Fellow of the American Academy of Family Physicians, a Cannabinoid Medicine Specialist and Medical Review Officer. She completed her Bachelor of Arts degree with high honors from Rutgers University and a Medical degree from the University of Medi...
TSC Talks! "Out of Southern Illinois, Come a Down Home Country Boy," with Keith Stroup, Founder of NORML
December 03, 2019 09:24 - 54 minutes - 49.7 MBKeith Stroup, Founder of NORML, may be a down-home country boy, from Southern Illinois, but he sure did make it in the big city (from Box #10 w/Jim Croce). Keith takes me on a walk, through the annals of his legendary history as a founding father of the marijuana legislation movement in the US. From his early years growing up in Southern Illinois, to Georgetown Law School where he became politically radicalized by the Vietnam anti-war movement, and he started using cannabis. After getting his...
TSC Talks! Inclusion for Everybody!🎉Tina Guenette Pedersen, Founder of R.A.M.P.~Real Access Motivates Progress
November 29, 2019 13:34 - 43 minutes - 40 MBTina Guenette Pedersen is the President & Founder of R.A.M.P.~Real Access Motivates Progress, and this is how her story starts; "Well, my name is Tina Pedersen. I'm 47 years old. I have two children and two grandchildren. And I was very active in my life. I was a cheer coach, dance mom, a Boy Scout leader, a football mom. Anything my kids did, I did with them tenfold. "I'm a four-time cancer survivor-breast twice, bladder twice. And during one of my bladder cancer surgeries, it was a very mi...
TSC Talks! Planting the Seeds, Sowing Hope with Marissa Fratoni, RN-BSN, Holistic RN, Cannabis Advocate , Green Nurse, Freelance Writer
November 23, 2019 10:56 - 42 minutes - 38.5 MBMarissa Fratoni, Holistic RN - Cannabis Therapeutics - Maternal Health - Writer - Public Speaker, is a wealth of information and insight on cannabinoid therapeutics holistic medicine and integrative health. I met Marissa through Jessie Gill, Marijuana Mommy, when discussing our medical cannabis project, wondering if she knew of any local to MA cannabis nurses so was thrilled when she agreed to have a chat. We started off talking about how she went from traditional nursing in a very demandin...
TSC Talks! TSC Talks Meets The Canna Mom Show~Inspiring Stories Told By Real Cannabis Moms with Joyce Gerber & Amie Searles
November 18, 2019 20:34 - 45 minutes - 42.1 MBJoyce Gerber & Amie Searles are The Canna Moms who started the local-to-MA podcast called The Canna Mom Show!. Referred to as The Click and Clack of Cannabis, while also aspiring to be the Terry Gross of Cannabis Talk, these ladies were awesome. Funny, smart and actually visionaries who want to get the word out that Canna Moms are not lazy, good for nothing slackers who are a burden to society but exactly the opposite! Inspirational visionaries out to change the world, one canna story at a ti...
TSC Talks! Unlocking the Potential of Our Planet with Russell Cole ~ Visionary, Cannabis Industry Leader & CEO of Organic Grow Solutions
November 13, 2019 10:35 - 39 minutes - 36.2 MBRussell Cole describes himself as "FUTURIST - EDUCATOR - BUSINESS LEADER, An entrepreneur who is motivated by providing access to technologies and innovations that we should already be benefiting from. I am humbled by the deep network of passionate, caring, professional and incredibly intelligent people I am fortunate to be surrounded by and learn from, daily." In this episode, we start off discussing how Russell got his start in the cannabis industry and his current role as CEO of Organic G...
TSC Talks! Revolutionizing Healthcare with Cannabinoid Medicine~Janna Champagne, RN, BSN, Cannabis Nurse, Medical Cannabis Expert
November 06, 2019 16:55 - 1 hour - 55 MBNurse Janna Champagne, RN, BSN, Cannabis Nurse and Medical Cannabis Expert joined me to discuss her lived experience and work in the cannabis industry, including the success she's had utilizing cannabinoid medicine for her daughter with Autism. Janna's introduction to the cannabis industry began as a cannabis patient when she suffered a health collapse in 2012. She credits cannabis for helping to reduce her reliance on harmful pharmaceuticals, and for supporting her ability to regain optima...
TSC Talks! Stacey Jackson~Special Education Advocate, Keeping the Big Picture in Mind & Setting the Bar High
November 04, 2019 14:00 - 34 minutes - 31.3 MBStacey Jackson, special education advocate, parent, engineer & past school committee member stopped by the podcast to give us an update on her daughter's out of district placement as well as engage in a discussion on the transition process. Stacey discusses how the immersive experience living away from home in a setting such as Riverview School, a co-educational boarding school placement, can be beneficial for those with "complex learning challenges" and has served her daughter well. Keep...
TSC Talks! Cannabis Education; Accessibility, Affordability & Acceptance with Dr. MaryMD & Kevin Greene of Cleveland School of Cannabis
October 31, 2019 10:47 - 44 minutes - 40.5 MBKevin Greene, VP of Cleveland School of Cannabis is an Entrepreneur - Strategic Marketer - Business Development - Cannabis Entrepreneur. He shares his experience in the education arm of the cannabis industry and the novel programs and success of CSC in terms of job placement, online and brick/mortar options and more! Dr. Mary Clifton shares her inspiration for getting into the industry with 25 years experience in traditional medicine. "My goal here is to normalize cannabis and just make it so...
TSC Talks! Questioning the Status Quo, Steven L. Kelley, President, CEO of Ellenville Regional Hospital & TSC Talks Update
October 23, 2019 19:46 - 47 minutes - 43.7 MBSteven L. Kelley, President, and CEO of Ellenville Regional Hospital joins Jill in a discussion on the changing landscape of the healthcare industry as well as his involvement with Nicky's Gardens of Hope as a Board Member. Jill also gives a longer than usual introduction, tying together past, present and future guests, and some back story on the broadening subject matter, inspiration, and vision for the podcast. Steve has been the President and CEO of Ellenville Regional Hospital since Se...
TSC Talks! Major Motivators! Spectrum Sports~Sports & Fitness Programs for Autism, IDD, & More
October 15, 2019 10:48 - 38 minutes - 34.8 MBThe Spectrum Sports team is comprised of Dan Minko, Lisa Faracchio and James Paoletti, all involved in special education in some capacity in their local NJ high school. They got together to form Spectrum Sports. All are passionate about fitness and exercise, and being keenly aware of the challenges their students had accessing more typical opportunities for sports engagement in their local school district, they launched their business. "Spectrum Sports is an exercise program for individuals...
TSC Talks! MMJ Mystery Minimized with Marijuana Mommy! Jessie Gill~Cannabis Nurse, Educator & Advocate
October 14, 2019 17:27 - 35 minutes - 32.4 MBJessie Gill, AKA "Marijuana Mommy" is a Mom, Cannabis Advocate and R.N with a background in holistic health and hospice. She shares the story of her path leading to cannabis advocacy after a spinal injury left her at a personal rock bottom. Jessie loved her career as a hospice nurse, inspired been inspired to enter the field of nursing by her mother, also a nurse. After having unsuccessful spinal fusion surgery, taking multiple heavy-duty pharmaceuticals, she reluctantly became a medical mar...
TSC Talks! Cannabis/CBD Pharma Talk with Daniella Benea, Pharm.D a Medical Marijuana Dispensary Pharmacist in CT & MA
October 07, 2019 19:47 - 42 minutes - 38.5 MBDaniella Benea, Pharm.D., licensed pharmacist working in the medical marijuana industry in CT & MA comes on to discuss her experience thus far working in the growing cannabis industry. A graduate of UConn School of Pharmacy, Daniella started out working as a Stop & Shop store pharmacist but took advantage of an opportunity to work at a CT dispensary, hoping for more hands-on patient engagement. She discusses the medical marijuana industry in both CT & MA and gives her thoughts on the future o...
TSC Talks! Strong and Steady ~ Shelly Meitzler! Mom of Three, 2 with TSC, Community Programs Manager, East ~ TS Alliance
September 30, 2019 13:02 - 1 hour - 66.3 MBShelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We d...
TSC Talks! Part 2-A Discussion on CBD & Cannabinoid Medicine with Mike Robinson, Founder, Global Cannabinoid Research Center
September 18, 2019 12:29 - 56 minutes - 51.5 MB"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 Ca...
TSC Talks! Part 1- The CBD & Cannabinoid Conundrum; On Epilepsy & Autism -A Cannabis Love Story with Mike Robinson
September 16, 2019 12:17 - 44 minutes - 40.3 MBMike 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 pati...
TSC Talks! WHEN LAW ENFORCEMENT MEETS AUTISM with Ricardo A. Gomez
September 09, 2019 10:27 - 55 minutes - 50.9 MBIn 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 rec...
TSC Talks! Part 2 with Alexis Minnaar; Living with TSC; Never A Dull Moment. A South African Perspective
September 05, 2019 12:54 - 59 minutes - 54.9 MBIn 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 epil...
TSC Talks! Alexis Minnaar, Living with TSC; Never A Dull Moment-A South African Perspective
August 30, 2019 10:12 - 46 minutes - 42.6 MBIn 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 managea...
TSC Talks! "Occupant with Autism" Autism & the Role of Law Enforcement with Chief Joseph Snyder & Officer Phil Kraus, New Paltz, NY PD
August 12, 2019 13:12 - 32 minutes - 29.7 MBChief 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 ...
TSC Talks! Mark Martin, THE TSC CONNECTOR! 6 State Regional Coordinator, Advocate, Musician & Adult & Parent Living w/TSC
August 11, 2019 10:31 - 1 hour - 58.5 MBMark 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 a...
TSC Talks! An Invitation to Inspiration with Devoted Dad, Husband & TSC Advocate Rob Grandia
August 01, 2019 14:10 - 50 minutes - 46.2 MBRob 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 fr...
TSC Talks! IDD & Me; "I Wish He Could Talk", on Sibling Impact with Max Piltz, brother to Nicky, with TSC, IDD
July 25, 2019 12:26 - 7 minutes - 7.07 MBMax 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 revolution...
TSC Talks! "There is No Other Choice" Nicky's Gardens of Hope or Bust, with TSC Mom, Founder & CEO Adriana Piltz
July 24, 2019 11:34 - 44 minutes - 40.7 MBAdriana 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 ter...
TSC Talks! Part 2; Are You Listening? "This is Who I Am & This Is What Our Family Is" with Cecilia Pratt
July 23, 2019 13:40 - 39 minutes - 35.9 MBIn 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 ...
TSC Talks! Part 1; Are You Listening? Getting Real with Cecilia Pratt, TSC Case Manager & Mom
July 22, 2019 10:36 - 38 minutes - 35.6 MBCecilia 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 MD...
TSC Talks! Hope on the Horizon, Part 2-with Jaye Isham, Master Communicator & VP of Communication Strategy, TS Alliance
July 11, 2019 12:04 - 42 minutes - 39 MBJaye 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 much...
TSC Talks! Hope on the Horizon, with Jaye Isham, Master Communicator & VP of Communication Strategy, TS Alliance
July 09, 2019 16:45 - 47 minutes - 43.3 MBJaye 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 loo...
TSC Talks! The Power of TSC Moms; From Gratitude to Grief & Back; 6 Sound Bites.
June 28, 2019 18:02 - 31 minutes - 28.7 MBIn 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, ...