72. The Power of a Mother's Love To Drive Change with Dr. Tracy Dixon-Salazar

Becoming Heart Strong

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

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