Jill Woodworth

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 experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating fact

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 order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

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 exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change.(www.bensound.com)

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, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

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)

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 and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

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 Carrie's boss on King of Queens, the highs and lows of show business, his passion for live theater, dealing with challenging life events, family, parenting, "bad" habits, diet, exercise, meeting his lovely wife Mo' Collins, their connection with the TS Alliance, & Co-hosting Comedy For A Cure. We wrap it up with a brief discussion of his new podcast "Skuby Talk", the joys of podcasting and more!Music Credit, "Lucky Stars" www.woodywoodworth.com

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, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with th

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 never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's workin

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 Academy is a career and work center for students with cognitive disabilities, ages 18-22, helping them make a smooth transition into the community upon their exit from the school system. We also delve into her entry into competitive running as a coping mechanism to deal with the stressors of TSC care. A longtime runner, Reiko decided to try a short triathlon. She was hooked, and in no time, was finishing her 5th Ironman in Chattanooga, TN, winning her age group on her birthday!!, Later this year, she will compete in her

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 could discover that may help stop the seizures, her perseverance led to Griffin's getting chosen to participate in a clinical trial of an investigational medication in to shrink the SEGAs, and as a result, a significant reduction occurred in the size of his tumors. The exceptional results of this trial led to the rapid FDA approval of Afinitor, the first drug designated to specifically treat SEGAs associated with tuberous sclerosis complex (TSC) in 2010. We discuss Debora's government advocacy in the evolution of the Ma

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 the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need

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 thru month's end. Katie joined the TS Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts, supports the research grants process, and has served as the secretary of TSC International for the past 5 years. During her tenure with the TS Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Mexico, Asia, India and Hungary. Thanks, Katie for giving us this behind the scenes

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 yearning for meaning she never knew she had. “ I wanted to take the feelings I had and use them to change the world, so other families never had to experience the loss I experienced.” Through methodical, persistent, unrelenting grit, Kari and the families she fights for changed everything. She has built a culture of respect, creativity, and collaboration where everyone has a voice. An example of this grassroots collaboration is the Congressionally-Directed Medical Research Program which began funding TSC research at the Depart

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 in depth her experiences from initial days after adopting and integrating into her life to current day and the unique challenges this presented. (intro music credit: https://www.purple-planet.com/)

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 something in this episode for everyone; from TSC affected, special needs parents, anyone who's struggled with coming to terms with witnessing the suffering of their loved ones frequently, having to figure out ways to help with few road maps and,how that impacts us as parents and caregivers. We must find "shelter from the storm" and keep moving forward despite continual challenges on many fronts in order to survive and help our loved ones affected.

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), affects 90% of those with a diagnosis of TSC. She also answers some questions that have come up in Facebook groups related to TAND and gives a perspective of what has worked for their family, how it has worked, as well as what has not worked, Behaviors related to TSC are a double whammy on top of the medical aspects of TSC care and management. Marlo, a bit of a veteran of the TSC/TAND lived experience, acknowledges the ongoing uncertainty and challenges TSC/TAND has presented, yet also provides insight and information,

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 episode has something for all those in the TSC & Special Needs Communities as she touches on most of the experiences one will encounter at some point as they navigate this often uncharted path of TSC management as affected individuals and/or parent/caregivers of loved ones affected. Well worth your time!

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 services system. Like an elephant in the room, this man truly has seen the whole elephant. Danny took the time to talk to me about my experience with the many facets of TSC care over the last 22 years and validate the challenges, exclaim over the disconnects, yet also share how it's possible to find ways to work together. He has vast experience as a patient/caregiver, activist, writing, speaking, and advising people in their health journey. Danny is MPH, RN, CPHQ, a nationally recognized nurse leader and advocate for fa

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 had postoperative partial paralysis. She concludes by offering multiple practical suggestions & techniques for applying these practices in our own situations. As a body-oriented psychotherapist, she looks at how visceral reactions relate to mental health, as well as emotions and thoughts. Both of her primary ways of working were influenced by the research of Stephen Porges, who wrote the Polyvagal Theory.