TSC Talks!

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 e...

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, hav...

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 mu...

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 ans...

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 ha...

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 l...

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...

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 vari...

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), i...

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...

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...

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 so...

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narro...

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, includin...

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this ro...

Continuing our conversation from Part 1, Chelsea talks a bit about difficulties with the local school system, coping with stigma, mental health issues, seeking support, finding the moments and living them, rocking out to AC/DC, thriving with Thrive nutrition and more! (music by www.bensound.com ) Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run a...

Alex Skuby, Actor, Co Hosted the recent Comedy for A Cure Fundraiser for the TS Alliance and was kind enough to come on TSC Talks, share some laughs and give me the low down on life. He shares from his early years growing up in NJ, how he got into acting, by taking Acting 101 in college on a whim, falling in love with acting, it's therapeutic value, moving to Chicago in 1996 to pursue a career in...

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially w...

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 w...

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)an...

Debora Moritz is a Grassroots Advocate, Chair of TS Alliance of Arizona, Member of the Government Relations Committee, and most importantly "just Griffin's mom trying to make things better for him and few other folks along the way." From diagnosis of TSC at 5 months, vigabatrin failure, ACTH treatment success, early frustrations with lack of knowledge, Debora kept asking questions everywhere she w...

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 seizu...

In this episode, my guest Katie Smith, Manager of Research and Global Affairs at TS Alliance discusses with me in detail, just how she coordinates March on Capitol Hill every year to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP). She gives an inside look at the process of organizing volunteers from across the country for this gargantuan undertaking as wel...

Kari Luther Rosbeck, President and CEO of the TS Alliance since 2007, has masterfully steered the ship from the early days where “all we could do was hold the hands of parents as they went thru the struggle to today where we have drugs that shrink TSC tumors and are starting our first trial aimed at preventing epilepsy from ever developing in infants with TSC.” In this personal yet powerful episod...