TSC Talks!

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 working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

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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 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 6th Ironman in Hawaii. We discuss training, racing, fundraising, and much more. Reiko draws motivation from the unpredictable and often intense nature of TSC care, "While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free". Originally from Setagaya Tokyo, residing in Roswell, GA with her husband and daughter. "Reiko's perseverance, determination, risk-taking, traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact" (https://cdmrp.army.mil/cwg/stories/2013/donato_profile) (music credit: https://www.purple-planet.com/)

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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 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 March on Capitol Hill, growing from a handful of people to well over 100 volunteers last year and getting 200 Democratic & Republican Representatives signing on to support TSCRP funding. We hit some of the highlights from successes over the years, working with other volunteers, making personal connections and continually asking the tough questions that demand better answers are part of Debora's methods of grassroots advocacy. In her own words, " We cannot wait for others to keep the momentum going for us; we must do so together. "We can change lives. And we can get to a place where no one has to suffer from the devastating effects of tuberous sclerosis complex, but it takes action." (music credit: https://www.purple-planet.com/)

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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 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 to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

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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 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 glimpse of how this event comes together, as well as emphasizing the ongoing efforts needed by volunteers to follow up and continue to get record numbers of bipartisan support in the House & Senate of TSCRP, enabling further research, better treatments, leading to a cure for TSC.
(intro music: https://www.purple-planet.com}

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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 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 Department of Defense because of one grandfather’s lobbying of the Appropriations Committee Chairman got $1 million set aside in the annual federal budget in 2002. We have to fight for this every single year, with our March on Capitol Hill, but since then, $83 million has been appropriated for TSC research, and it’s made a profound difference. There’s much more included here & much thanks to Kari for taking the time to share from her heart and soul and providing ongoing inspiration and hope to all those affected by TSC personally or in our loved ones, and steering us all toward a better understanding of this linchpin disease meaning that every advance made in our search for answers and a cure may also lead to answers and advances in other more prevalent diseases like epilepsy, autism, and cancer. (intro music credit: https://www.purple-planet.com)

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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 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/)

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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 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.

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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), 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, and once again, hope that quality of life is possible.

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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 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!

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