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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; "Bring on the Rain", Part 3- Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

5/24/2019
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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 narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in...

Duration:00:32:27

TSC Talks; "Bring on the Rain", Part 2- Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

5/11/2019
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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, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie...

Duration:00:27:03

TSC Talks; "Bring on the Rain"; Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

5/8/2019
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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 rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district,...

Duration:00:46:23

TSC Talks; The Tidal Waves of TSC; Part 2 Strength Under Pressure, with Chelsea Holman

4/29/2019
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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)

Duration:00:32:19

TSC Talks; The Tidal Waves of TSC; Taking it A Day at A Time & Making it Work, Part 1 with TSC Mom, Chelsea Holman

4/28/2019
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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 around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart...

Duration:00:33:28

TSC Talks; The Therapy of Theater, "Skuby Talk", & Comedy for a Cure with Alex Skuby, Actor/Podcaster

4/18/2019
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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 acting, then moving to LA in 1998, landing some regular roles on TV series, particularly as...

Duration:00:35:06

TSC Talks; "No Young Adult with TSC Fights Alone", with TS Alliance Junior Leader & Young Adult Advocate, Brianna Johnson

4/13/2019
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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 with skin symptoms. Brianna discusses the challenges related to transitioning to adult care,...

Duration:00:40:05

TSC Talks! Living It; Giving Everything But Up! Lauren Shores Shillinger, TSC Mom, Advocate & a TS Alliance Volunteer of the Year

4/6/2019
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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 was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had...

Duration:01:01:42

TSC Talks; Triathlons, Transition and TSC with Reiko Donato, TSC Mom, Ironman Triathlete, Chair TS Alliance GA

3/29/2019
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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)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition...

Duration:01:07:07

TSC Talks; "Vocatus atque non vocatus, Deus aderit.” with Grassroots TSC Advocate & Griffin's Mom, Debora Moritz

3/25/2019
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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 went with Griffin. Leaving no stone unturned in terms of trying anything and everything that she...

Duration:01:05:05

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

3/22/2019
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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...

Duration:00:55:26

TSC Talks; March on Capitol Hill 2019 Mastermind! TS Alliance Manager of Research & Global Affairs, Katie Smith

3/16/2019
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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 well as mentions the whats and whys of follow up with our Congresspeople that's so important now...

Duration:00:33:18

TSC Talks; Steering the Ship with Passion & Purpose; TS Alliance President & CEO, Kari Luther Rosbeck

3/16/2019
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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 episode, we discuss how the untimely death of her infant daughter to SIDS, opened her eyes to a...

Duration:00:33:10

TSC Talks; "Igniting the Flame of Infinite Potential for the Human Spirit" with Jackie Woodside

3/9/2019
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Jackie Woodside, certified (CPC, LICSW) and a best-selling author, TEDx speaker, radio and television personality and seminar leader who is passionate about expanding the edge of human potential, kindly granted TSC Talks this interview. She was willing to answer the more difficult questions about her past; overcoming much adversity to get to where she is today. Jackie also happens to be a special needs mom and shares her experience adopting a child with significant challenges and discusses...

Duration:00:39:17

TSC Talks; Everything is Broken. Trauma, TSC & Me. Family Impact, Survival and Hope with 22 yr. Grizzled TSC Vet & Mom, Jill

3/1/2019
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In this episode, TSC Talks Audio Editor Interviews grizzled TSC veteran, Jill Woodworth on what happened, what she learned, who she met and what's next. How understanding the impact of trauma has been the key that unlocked the doors to the integration of past experience, with present reality and how finding a way to have some quality of life in the midst of much uncertainty has been the motivating factor for developing the podcast. From diagnosis of TSC 3 times to the present day, there is...

Duration:00:38:15

TSC Talks; Episode 30, Riding the Waves of TSC & TAND, an Update with Marlo, TSC Mom & Past Chair of the TS Alliance of New England

2/22/2019
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Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders),...

Duration:00:32:30

TSC Talks; Episode 29, Charting a Course Home. TSC Mom, Heather Little, Describes How She's Managed & Overcome Infinite Challenges with TSC.

2/14/2019
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From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This...

Duration:01:22:19

TSC Talks; Episode 28, Ripple. A Discussion with Danny Van Leeuwen, MPH, RN, CPHQ, Patient and Caregiver Activist, Writer, Speaker & More!

2/8/2019
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Danny graciously put down one of his many "health hats" and came on the podcast to share his wisdom and deep knowledge of the inner workings of the medical industrial complex, aka healthcare system, from the many hats he's worn within the healthcare system across his lifetime. In turn, TSC management across a lifetime requires one to wear many "hats" as well. We discussed transitions and autonomy as it relates to moving from pediatric care to adult care in the medical/mental health/social...

Duration:00:51:37

TSC Talks; Episode 27, Invincible Summer! On TSC & Trauma with Body Oriented Psychotherapist & TSC Mom Caroline Ramirez

1/31/2019
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In this fascinating and inspiring episode, Caroline Ramirez, TSC Mom & Licensed Professional Counselor discusses the impact of different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. She discusses how we as parents can work with our children, to mitigate traumatic experiences which are often a part of TSC management and care and shares examples from her personal experience and successes with her daughter who had brain surgery at 15 months of age and...

Duration:01:06:43

TSC Talks; Episode 26, The Road Out; Exceptional Challenges on the TSC Path with PhD Psychotherapist & Special Needs Mom, Ginger Sullivan

1/24/2019
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Ph.D. Psychotherapist, Writer, and Special Needs Mom, Ginger Sullivan, gives us some of her insight, wisdom, and humor gleaned from over 26 years as a therapist in the D.C. area. We discuss the therapeutic process and the exceptional challenges to the psychological well being of special needs parents/caregivers managing chronic ongoing stress. She details how this chronic stress can impact our relationships with our children, ourselves, and our partners. Finally, she shares some DIY tips on...

Duration:00:36:42