There’s a 100% chance you will face challenges in your life and in the world around you. The truth is you already are. But it’s not what happens to us that defines us; it’s how we respond that marks our lives. Becoming Heart Strong explores how we can live with more courage, rebuild after setbacks, and strengthen ourselves from the inside out. Host Jess Lindberg interviews thought leaders, authors, experts, and everyday amazing people who’ve turned their struggles into movements, businesses, and inspiring stories. What have they learned? How have they grown? And what can we take from their experiences to help us with our own struggles? Their stories and insights will help you move from where you are today to where you want to be tomorrow. Jess Lindberg, who hosts The Becoming Heart Strong Podcast, is a coach, strategist, keynote speaker, and social entrepreneur passionate about inspiring people to grow through their challenges and live their full potential. On her show, she dives into transformative conversations and invites listeners to live with courage, overcome setbacks, and create meaningful impact in their world. As a sought-after life leadership expert and strategist, Jess works with purpose-driven individuals and organizations seeking to transform and create impact from unexpected circumstances. Jess has built powerful resilience through personal traumas and aims to help others build their resilience muscle through courageous self-leadership. Her warm, down-to-earth style and inspiring spirit have ignited the hearts and minds of many organizations and individuals. Follow Jess @jessmlindberg on Instagram and Jessica Lindberg on LinkedIn Follow The Heart Strong @theheartstrong on Instagram and The Heart Strong Collective on LinkedIn
Episodes
Wednesday Sep 18, 2024
Wednesday Sep 18, 2024
Jess Lindberg encourages you to listen to this episode not just for details of this inspiring story but also as a model for what you, too, can do when faced with an insurmountable problem.
Dr. Tracy Dixon Salazar, a mother, neuroscientist, geneticist, and patient advocate, shares her journey of discovering a novel precision therapy for her daughter's Lennox-Gastaut syndrome (LGS). LGS is a collection of symptoms characterized by seizure onset before the age of 18, multiple types of seizures, developmental delay or intellectual disability, and specific brainwave patterns. Tracy's research focused on understanding the wiring defect in the brain that leads to LGS and the possibility of rewiring to improve the condition. She emphasizes the importance of understanding the underlying causes of diseases and the need for more research in developmental epilepsies.
Tracy's story is a testament to the power of persistence and the impact a mother's love can have in driving change. Tracy Dixon-Salazar and Jess Lindberg discuss the e role of caregivers in finding treatments for rare diseases. Tracy shares her personal journey of discovering a treatment for her daughter's epilepsy through genetic sequencing and the off-label use of a calcium blocker drug. They emphasize the need for caregivers to be tenacious, curious, and advocate for their loved ones' health. They also discuss the challenges and underappreciation caregivers face and the importance of empowering women in caregiving roles. Tracy Dixon-Salazar discusses the importance of recognizing the expertise of caregivers and the need for collaboration between caregivers and medical professionals. She emphasizes the need for education, empowerment, and support for families living with rare diseases like Lennox-Gastaut Syndrome (LGS). Tracy also highlights the importance of advocacy and the work being done by the LGS Foundation to provide resources and support to families.
Chapters
Chapters:
00:00 Introduction to Dr. Tracy Dixon Salazar
04:11 The Wiring Defect in the Brain: LGS
08:35 The Importance of Understanding Underlying Causes
19:50 Unraveling the Impact of De Novo Mutations
22:12 The Journey of Genetic Sequencing and Treatment Discovery
26:05 Empowering and Valuing the Role of Caregivers
29:25 The Need for Knowledge and Expertise in Rare Diseases
42:02 The Care Expert
44:2 1Lived Experience Experts
50:56 About LGS Treatment Kits
54:11 Living in a Constant State of Crisis
57:22 Throwing Ourselves Against the Wall
Follow Tracy: https://www.linkedin.com/in/dr-tracy-dixon-salazar-5162921b/
LGS Foundation: https://www.lgsfoundation.org/
Read Tracy’s Story: https://www.today.com/health/disease/mom-gets-phd-daughters-epilepsy-rcna148783
You can follow Jess on Instagram, LinkedIn and Facebook
Access Jess’ FREE Future Self Mini Course
Learn more about The Heart Strong Collective
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