Jill Woodworth

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.

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 staying psychologically healthy, the use of medications in treatment and the range of treatment options available. I was grateful to hang out briefly via audio with my "old" college friend and glean some gems from the goldmine of her vast lived and learned experience.

Listen to this articulate and inspiring young lady, Saaim Ali, as she gives us a gripping inside look at the experience of having epilepsy. From diagnosis at age 7, thru the current day as a computer science major near Buffalo, NY, she discusses how she came to accept her diagnosis, difficulties in school, overcoming mental health challenges related to epilepsy, interacting with doctors as she takes responsibility and utilizes discipline and hard work to meet the many challenges a diagnosis such as epilepsy can present. She details how much it means to be recognized for accomplishments, not getting caught in a downward spiral of depression, seeking mental health support and finding joy and meaning in her life. Today, she uses her experiences overcoming the many frustrations of the "invisible" disease epilepsy to inspire and help others in her college setting.

Writer, Advocate, TSC Mom, Rebecca Gaunt shares her experience of TSC with her son Connor. She highlights her involvement with Cannabis legislation in GA, after finding it the only treatment adequate to gain control of devastating drop seizures. She shares the frustrations obtaining Cannabis for medical use in GA, as well as the incredible seizure control gained. She also compares effectiveness of Cannabis with and without CBD based FDA approved medication Epidiolex. Additionally, Becky poignantly shares challenges managing mental health issues in relation to TSC,, family impact and support, educational issues and much more.

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey

Hillary Savoie, writer, advocate, consultant, and most importantly, mother of Esmé, a medically fragile, developmentally delayed child, discusses the impact of PTSD on parents, Her recent article in Romper.com delves into this crucial topic as she explores the impact of PTSD with multiple parents. Our conversation centers around this misunderstood topic, the barriers to seeking help, the damage to relationships the need for the medical community to be cognizant and responsive, and much, much more. Hillary shares how she had to confront her own PTSD in order to make the necessary connections with those impacted to adequately engage and start to bring this hot-button topic to press. Hillary continues to raise awareness and gives multiple suggestions on how we can start to address this topic in our own communities and with those close to us.

In this brief episode, MaryEllen Lacy, 22, an adult living with TSC, gives me an update on her current living situation after moving out last April to Shared Living. I recently interviewed her caregiver Claire in Episode 18. MaryEllen fills us in on how it's going with Claire, as well as at her new program, HMEA. She details her experience with work, volunteer, and social activities as well as other things on her mind. I will mention that MaryEllen is on the autism spectrum and has dealt with PTSD in the course of her lifetime. I'm highlighting both PTSD and Autism as well as PTSD in caregivers among the TSC population as well as elsewhere.

Tarra Hassin gives us an inside look at her experience with her son Colin's TSC diagnosis at 10 weeks old with seizures and how she started to notice "strange things" happening. and that led to IS diagnosis and treatment. We also discuss TS Clinic in Denver, family impact, frustrations and challenges in the healthcare system, and education system. Her advocacy leading to legislation in NM to change the use of restraint in school settings as well as the need for more education and awareness of ABA therapy. Tarra shares her philosophy of acceptance and attitude while on this journey with TSC.

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

A day in the life of Shared Living Provider, Claire Despres. We discuss the ins and outs of shared living; the program itself, the process of finding a client, the role of a good case management team, and then we get a glimpse at a day in the life of her client, MaryEllen Lacy. MaryEllen is a young adult living with TSC who has been on the podcast herself.

In this episode, I go local in this discussion of special education with past school committee member and experienced special needs mother, Stacey Jackson. We go in-depth on Stacey's hands-on experience advocating for her daughter, from early intervention to high school and beyond, her experience with mediation, working with your child's IEP team collaboratively for a successful inclusion as well as alternative placements. Stacey also provides us with an inside look at the often misunderstood budget for all education, including special ed. The limitations as well as successes within a rather large regional school district and how working to find solutions that is not only helpful for all involved but cost-effective. Check out https://tsctalks.com and @tsctalks on FB for detailed questions and answers and information discussed!

HOPE WINS. In the words of new TSC Mom Meghan Wilson, "Live the Moments". Meghan talks about her baby Cameran's diagnosis at 2 months, getting seizure control, ketogenic diet, the MGH TS Clinic, and family support with TeamCamBam. #TeamCamBam was made up of multiple family members all running for Cameran, and TS Alliance as part of TeamTSC , in the recent Marine Corp Marathon! Team Cam Bam raised over $30K for TS Alliance!

Previous podcast guest, Dorina Leslie, Interviews host Jill Woodworth on her experience with TSC in her children, impact personally and how this led to her involvement with Marine Corp Marathon TS Alliance, Team TSC as well as origins of TSC Talks podcast, development and motivations.