Best Epilepsy Advocate Podcasts (2024)

1
The Sudden and Life-Altering Impact of Adult-Onset Epilepsy 34:43

5d ago34:43

34:43

Jon Tuteur shares his journey with adult onset epilepsy. From his first seizure at age thirty, through his epilepsy diagnosis, treatment, and eventual brain surgery, Jon discuses the physical and emotional impacts of seizures, medications, diagnostic tests, and medical procedures The post The Sudden and Life-Altering Impact of Adult-Onset Epilepsy …

1
Migraines and Concussions: Advocating for Diagnosis and Treatment - Dr. Briar Sexton 46:32

8d ago46:32

46:32

Send us a Text Message. Can chronic migraines and concussions be as debilitating as severe strokes or daily dialysis? In this episode, I sit down with Dr. Briar Sexton, a dedicated physician from British Columbia, to dive into the profound impact these invisible conditions have on quality of life. We explore the tough realities of diagnosing and ma…

1
Understanding Epilepsy, with Anna Diaz & Luis Martinez of Epilepsy Alliance Florida | EDB 324 28:38

10d ago28:38

28:38

Epilepsy Alliance Florida’s Anna Diaz & Luis Martinez share facts about seizure disorders, and how the Alliance is working to increase awareness and support.Anna Diaz is a Social Service Aide for the Epilepsy Alliance Florida (EAF), and is herself an epilepsy self-advocate. Luis Martinez is a Community Resource Specialist for EAF. Established in 19…

1
Seizures, Surgeries and Living Authentically: Talking About Epilepsy - Jonathan Tuteur 49:33

22d ago49:33

49:33

Send us a Text Message. You have your first few seizures and people tell you not to share your diagnosis of epilepsy because they are afraid for you. Afraid of the potential shame and discrimination you will face. While this is well-intentioned, you do the opposite. In this podcast episode, we hear from Jon Tuteur, who shares his experiences of liv…

1
9Muses: Supporting Mental Health Through Art & Peer Support, with Nicole Storrs | EDB 323 32:40

25d ago32:40

32:40

9Muses Art Center’s Nicole Storrs shares how their drop-in center is helping people with mental health challenges. 9Muses Art Center is a drop-in center located in Fort Lauderdale, FL. They are a program of Mental Health America of Southeast Florida providing free peer-driven behavioral health support to adults with mental health and substance abus…

1
How to Talk About Suicide Openly and Compassionately - Tara Adams 40:53

1M ago40:53

40:53

Send us a Text Message. When was the last time you had a conversation with your colleagues, friends or family about suicide awareness and prevention? Today’s episode has a content warning as my guest and I talk about a complex and serious topic - Suicide awareness and prevention. CONTENT WARNING: This episode contains some sensitive content as we t…

1
Older Adults and Epilepsy: the Causes, the Signs, and the Treatments 28:27

1M ago28:27

28:27

Dr. Laura O’Dwyer discusses the fastest growing segment of people living with epilepsy, adults over 65 years old. Dr. O’Dwyer provides an overview of the causes of epilepsy in older adults, the subtle signs to look for, and the importance The post Older Adults and Epilepsy: the Causes, the Signs, and the Treatments appeared first on CURE Epilepsy.…

1
Coming off Anti Depressant meds slowly with Sharon Andrews 46:00

1M ago46:00

46:00

Sharon is a full time academic, part time comedian, terrible cricket player and a fan of big Barossa reds. This all means, she likes thinking, tinkering and drinking. What she doesn’t like is writing bios. Our interview is based around the 23 years it took Sharon to get off Anti depressants. She tried a few times to do it more hastily (over 3 month…

1
Living with Long COVID: Diagnosis, Hope, and Acceptance: Ally 39:46

2M ago39:46

39:46

Send us a Text Message. In this episode, I'm joined by Ally, who shares her firsthand experience with long COVID. Since her diagnosis, Ally has faced numerous challenges, from persistent symptoms that just won’t go away to major life changes that have reshaped her daily routine and long-term plans. We talk about the impact of long COVID on her life…

1
Different Not Less: Living with Autism - Lindsay Malkinson 27:51

2M ago27:51

27:51

Send us a Text Message. Have you ever felt like the world just doesn't see you for who you truly are? In this episode, Lindsay shares her experience living with autism. Lindsay explains how she navigated the challenges of being misunderstood and misdiagnosed until she found acceptance and began advocating for herself and others with autism. Her sto…

1
Concussions, Lyme Disease, and Building a Global Impact Company - Manpreet Dhillon 49:17

2M ago49:17

49:17

Send us a Text Message. Are you someone who turns your toughest challenges into a force for positive change, not just for yourself but for others too? How do you find the strength to advocate for yourself and a more inclusive world, even when facing your invisible struggles? Manpreet lives with multiple concussions, Lyme disease and other invisible…

1
NAMI: Empowering People Living With Mental Illness, featuring Katherine Murphy | EDB 322 26:10

2M ago26:10

26:10

Katherine Murphy, CEO of NAMI Palm Beach County, share how the alliance is helping people with mental health challenges in South Florida and throughout the nation. NAMI Palm Beach County is an affiliate of NAMI - THE national Alliance on Mental Illness. From their website: “NAMI PBC is an organization dedicated to providing support, education and a…

1
Redefining Strengths: Thinking Differently with Dyslexia - Nick Koshnick 49:17

2M ago49:17

49:17

Send us a Text Message. Nick Koschnik, a physicist and business founder didn't let dyslexia hold him back. Instead, he turned it into his strength, creating StoriedWork.com to help others communicate their thoughts and ideas. We discuss how important it is to get help early on for dyslexia, and how great it is when people understand and accept ever…

1
One Woman’s Epilepsy Journey Through Childhood, Parenting, Discrimination, and Surgery 36:57

2M ago36:57

36:57

This month on Seizing Life® author Laura Beretsky shares her decades-long journey with epilepsy chronicled in her recent memoir Seizing Control. The post One Woman’s Epilepsy Journey Through Childhood, Parenting, Discrimination, and Surgery appeared first on CURE Epilepsy.By CURE Epilepsy

1
Choosing Me: From Diagnosis to Advocate - Sydney Elaine Butler 41:22

2M ago41:22

41:22

Send us a Text Message. When Sydney Elaine Butler speaks, you can't help but be drawn into the raw and transformative power of their voice. As the founder of Accessible Creates, Sydney lives with autism, CPTSD, and fibromyalgia. Their conditions are not just a backdrop but a driving force behind their commitment to fostering disability-inclusive sp…

1
Fusion Academy: Success Through One-On-One Education, with Tainah Georges | EDB 321 18:04

2M ago18:04

18:04

Fusion Academy’s Tainah Georges explains how they use a one-student-to-one-teacher model that allows students to achieve academically. Fusion describes itself as: “the world's most personalized middle and high school, with 1-to-1 classes that match your student's pace and preferences, so they can learn better, dive deeper, and never get left behind…

1
How Therapy Animals Help, with the Canine Assisted Therapy team | EDB 320 23:01

3M ago23:01

23:01

Canine Assisted Therapy’s Courtney Trzcinski, Laura Rogers, and Gracie share what therapy animals do, and how they positively impact those with social and health challenges. Canine Assisted Therapy, Inc. is a pet therapy organization located in Broward County, Florida. Their mission is to improve the health and well-being of people in need through …

1
The Root Cause of Anxiety: Hurry up and Slow Down - Dr. Natasha Gosh 49:23

3M ago49:23

49:23

Send us a Text Message. When the world demands high-speed living, can taking a moment to slow down help us speed up? Is there a root cause of anxiety and if so, what does that look like? Dr. Natasha Ghosh, a clinical counsellor, shares how the pressures of society can amplify our stress and how recognizing what's in our control can ultimately suppo…

1
Project S.A.L.T.: Creating Self-Advocate Leaders with Shelly Baer & Jairo Arana | EDB 319 27:59

3M ago27:59

27:59

University of Miami’s Shelly Baer & Jairo Arana discuss their Self-Advocate Leadership Training (SALT) program.Shelly Baer is a licensed clinical social worker, disability self-advocate, and the director of leadership training initiatives at the University of Miami School of Medicine’s Mailman Center for Child Development. Jairo Arana is a clinical…

1
Navigating Grief and loss - Deanne Rhynard 44:14

3M ago44:14

44:14

Send us a Text Message. Grief is a journey that many of us face, making us feel alone even though it's a common experience. This week, Deanne shares her deeply personal story of dealing with major losses: the death of her aunt, a miscarriage, her child's hospital stay, and changing jobs, all happening in just 45 days. She opens up about the unique …

1
A Nurse’s Knowledge & A Mother’s Love Leads to Son’s Life-Changing Brain Surgery 34:21

3M ago34:21

34:21

A mother uses her nursing knowledge to advocate for her son’s epilepsy care and surgery. The post A Nurse’s Knowledge & A Mother’s Love Leads to Son’s Life-Changing Brain Surgery appeared first on CURE Epilepsy.By CURE Epilepsy

1
Recognizing the Need for Answers: Embracing my ADHD Diagnosis - Martin Hauck 49:03

3M ago49:03

49:03

Send us a Text Message. When Martin opened up about his late-recognized inattentive ADHD, it wasn't just a personal revelation—it was a story that resonated with many of us flying under the radar with our struggles. Our latest episode takes you through the ups and downs of his journey, from the draining work project to his diagnosis at 38, and the …

1
Neurodiversity Self-Advocate Spotlight: Zachary Tovin's Autism Journey | EDB 318 18:28

3M ago18:28

18:28

Zachary Tovin shares his perspective on being an autism self-advocate. Zach is on the Autism Spectrum and grew up in South Florida. After high school, he attended the Horizons School in Birmingham, Alabama, where he studied and honed the skills he would need to live and work independently. In 2019, Zach graduated from ARC Broward Culinary Arts prog…

1
Kim Kid Curry talks living with MS and the importance of Vitamin D 29:18

4M ago29:18

29:18

As a 33 year radio broadcaster, Kim Curry was forced into retirement after a diagnosis of Multiple Sclerosis at age 50. We discuss his life before, when he was a radio presenter and the crazy things he got up to during that time. During the diagnosis, as in, what the symptoms where that led him to see a doctor and then about the lesions that starte…

1
Surviving Military Sexual Trauma and addiction with Kimberly Clarke 28:35

4M ago28:35

28:35

In this episode I talk with the inspirational Kimberly Clark, a Navy veteran who used her biggest obstacles to find opportunities for empowerment and recovery. Kimberly talks about her horrific childhood and military sexual trauma experiences, her battles with addiction, and her road to recovery that made her an inspiration to those going through s…

1
Advocacy, Accommodations, and Washroom Breaks. Life with Crohn's Disease - Joshua Peterson 49:08

4M ago49:08

49:08

Send us a Text Message. Consider donating today: https://www.buymeacoffee.com/timreitsma Summary: In this episode, Tim Reitsma talks with Joshua Peterson about the realities of living with Crohn's disease, spotlighting the crucial role of advocacy and the need for tailored workplace accommodations. They share personal stories that underscore the st…

1
Miscarriages Do Not Discriminate - Living with Recurrent Pregnancy Loss: Angel Leung 50:33

4M ago50:33

50:33

Send us a Text Message. Consider donating today: https://www.buymeacoffee.com/timreitsma Summary: In this episode of the "Invisible Condition" podcast, host Tim Reitsma talks with Angel, a registered nurse from British Columbia, who courageously shares her journey through recurrent pregnancy loss. Angel opens up about the emotional rollercoaster an…

1
CAI: Harnessing Neurodiverse Talent, with Anthony Pacilio | EDB 317 27:36

4M ago27:36

27:36

Anthony Pacilio of CAI shares of they are helping organizations realize the benefits of neurodiversity.Anthony Pacilio, is recognized domestically and internationally, as an expert in neurodiverse employment and currently serves as Vice President of CAI Neurodiverse Solutions. Pacilio specializes in advancing neurodiversity programs and leads the g…

1
Artificial Intelligence and Epilepsy: The Promise & Pitfalls of AI in Diagnosis and Treatment 37:28

4M ago37:28

37:28

Dr. Daniel Goldenholz of Beth Israel Deaconess Medical Center discusses the current and potential impacts of artificial intelligence on epilepsy care. The post Artificial Intelligence and Epilepsy: The Promise & Pitfalls of AI in Diagnosis and Treatment appeared first on CURE Epilepsy.By CURE Epilepsy

1
Courage to Advocate: How to Effectively Disagree - Dr. Maureen Michele Petersen 57:33

4M ago57:33

57:33

Send us a Text Message. Summary: Dr. Maureen Michele Petersen discusses her book 'Reclaiming Life, A Guide for Parents of Chronically Ill Children' and the motivation behind writing it. She shares her personal experiences as a mother advocating for her chronically ill child and the importance of effectively disagreeing with medical professionals. W…

1
Successful WITH My Diagnoses: Katherine McCord 55:09

4M ago55:09

55:09

Send us a Text Message. Summary: Katherine McCord discusses the power of vulnerability and the impact of sharing your story. She emphasizes the importance of creating a safe space for vulnerability in the workplace and the need for accommodations to be standard options. Katherine also highlights the challenges of dealing with nosy questions and uns…

1
ADHD in the ER, with Ali Idriss | EDB 316 14:35

4M ago14:35

14:35

Self-advocate & EMT Ali Idriss discusses how his ADHD traits help him navigate his work in emergency rooms, and offers advice for dealing with a trip to the ER. Ali Idriss is a Different Brains team member and ADHD self-advocate. He aspires to share his journey and help others with the tools that have allowed him to overcome many of the challenges …

1
Invisible Condition - Ep 013 - Stiff Person Syndrome Doesn't Define Me - Tisha Foster 52:30

5M ago52:30

52:30

Send us a Text Message. Summary: Tisha Foster shares her journey with Stiff Person Syndrome and how she has overcome the challenges it presents. She discusses her determination to live life to the fullest and not let her condition define her. Tisha emphasizes the importance of vulnerability and sharing one's story to raise awareness and end the sti…

1
Autism & Developmental Therapy, with Dr. Jennie Trocchio | EDB 315 25:48

5M ago25:48

25:48

Dr. Jennie Trocchio shares how developmental therapy can help autistic individuals, and how it differs from behavioral methods. Dr. Jennie Trocchio is an autism educator, speaker, Developmental Therapist, and Vice President of Clinical Operations at Positive Development. Positive Development’s mission is to “…help people with autism and other devel…

1
S6 E53 Break Out the Bubbly: We're Still Blonde & Disorderly 1:01:47

5M ago1:01:47

1:01:47

Real Housewives of Miami? More like RHOASD. We South Florida moms are back with plenty of updates, laughs, and endless banter. Pero también some clever use of mouth tape. Que? Listen at the link above and on all major platforms: Apple Spotify iHeartradio Audible Visit the rubias on their other media: Instagram Twitter YouTube TikTok Facebook Have s…

1
Invisible Condition - Ep 012 - Disability is diversity - Myles Wallace 49:26

5M ago49:26

49:26

Send us a Text Message. Hiring someone with a disability is a risk and a liability so we try not to go there. People with disabilities don’t perform as well so we avoid hiring someone with a disability. Guess what? You most likely have people in your organization who live with a disability, you just can’t see it. It’s invisible or non-apparent. So,…

1
Invisible Condition - Journal Entry No. 5 - Quit and Run 10:19

5M ago10:19

10:19

Send us a Text Message. I have a lot of thoughts swirling around my mind. While there are many ways to release these thoughts, I thought to myself, “Why not record them and share them publicly.” It already feels like someone is about to find my journal, and my private thoughts, and start reading. But I decided, that’s alright! These are my thoughts…

1
Invisible Condition - Ep 011 - I've got so much OCD - Alicia Disantis 48:43

5M ago48:43

48:43

Send us a Text Message. ** Please consider donating to keep the show going** Head to https://www.buymeacoffee.com/timreitsma to learn more! Summary: In this episode, Alicia shares her journey of living with OCD and seeking a diagnosis. She discusses the lack of awareness and recognition of mental illness in the past, as well as the importance of sh…

1
2023 In Review: Neurodiversity Change-Makers | EDB 314 18:24

5M ago18:24

18:24

In the second part of our review of 2023, we hear from some of the neurodiversity change-makers that have appeared on the show. Featured are: DR. MICHAEL ALESSANDRI - full interview: https://differentbrains.org/working-together-for-the-autism-community-with-dr-michael-alessandri-edb-290/ | learn more about their work here: https://people.miami.edu/…

1
Best of Seizing Life 2023 30:13

5M ago30:13

30:13

This week on Seizing Life®, we revisit several compelling conversations from the past year in our Best of Seizing Life 2023 compilation episode. The post Best of Seizing Life 2023 appeared first on CURE Epilepsy.By CURE Epilepsy

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2023 In Review: The Self-Advocates | EDB 313 15:19

5M ago15:19

15:19

In the first part of our review of 2023, we hear from the neurodivergent self-advocates that have appeared on the show. Featured are: JR HARDING - full interview: https://differentbrains.org/pioneering-workplace-inclusion-with-dr-jr-harding-edb-297/ | learn more about their work at: https://jrharding.com/ HAYLEY & MATTHEW LEACH - full interview: ht…

1
Rare Epilepsy Organizations: Fostering Community and Advancing Research 20:20

5M ago20:20

20:20

This week on Seizing Life® we speak with two rare epilepsy organizations, The KCNT1 Epilepsy Foundation and The Cute Syndrome Foundation, about community, awareness, and advancing research. The post Rare Epilepsy Organizations: Fostering Community and Advancing Research appeared first on CURE Epilepsy.…

1
Living with Inattentive ADHD, with Cynthia Hammer | EDB 312 30:18

6M ago30:18

30:18

Cynthia Hammer, self-advocate & founder of the Inattentive ADHD Coalition, shares her experiences with the disorder, and how it can differ from other types of ADHD.Cynthia Hammer is the Founder and Executive Director of the Inattentive ADHD Coalition, and author of the book She earned her Master’s Degree in Social Work in 1972. For many years she w…

1
Invisible Condition - Journal Entry No.4 - Reflection 11:42

6M ago11:42

11:42

Send us a Text Message. Summary Tim reflects on the purpose and vision of the Invisible Condition podcast, which aims to elevate voices and end the stigma surrounding invisible conditions. He shares his journey of overcoming health challenges and the birth of the podcast. The importance of reflection and the power of sharing stories are emphasized.…

1
Regenerative Brain Cell Therapy: One Woman’s Journey to Seizure Freedom 26:16

6M ago26:16

26:16

This week on Seizing Life® Annette Adkins discusses the impacts of intractable epilepsy on her life, and how it led her to a regenerative brain cell clinical trial that has brought her a year of seizure freedom. The post Regenerative Brain Cell Therapy: One Woman’s Journey to Seizure Freedom appeared first on CURE Epilepsy.…

1
Invisible Condition - Ep 010 - Vulnerability builds vulnerability - living with leukemia 41:39

6M ago41:39

41:39

Send us a Text Message. Summary In this episode, Felix Chan shares his journey of being diagnosed with chronic myeloid leukemia after a routine eye exam. He discusses the shock of the diagnosis, the challenges of living with the disease, and the importance of vulnerability and community support. Felix emphasizes the power of choice and encourages l…

1
Individualized Learning for the Neurodivergent, with Christina Sullivan | EDB 311 29:15

6M ago29:15

29:15

Evolve Learning Community’s Christina Sullivan discusses how the micro-school gives unique support to students that have struggled in traditional classrooms. Christina Sullivan is Co-Founder and Clinical Director of Evolve Learning Community (ELC), and provides individual therapy, coaching, training, and consultation in the community. From ELC’s we…

1
Joshua Shea talking about healing from Porn Addiction 37:16

6M ago37:16

37:16

Joshua Shea is a pornography addiction expert, certified betrayal trauma coach, therapeutic disclosure specialist and the author of four books about pornography addiction, including I’m Reading This Book About Porn Addiction For a Friend (2022). Since 2018, Joshua has given more interviews about pornography addiction and betrayal trauma than anybod…

1
Navigating Mental Health Challenges, with Gabriela Guardarrama | EDB 310 20:32

6M ago20:32

20:32

Mental Health counselor Gabriela Guardarrama shares her personal experiences dealing with bipolar disorder.Gaby is an an Outpatient Mental Health Therapist in the South Florida area. She was diagnosed with Bipolar Disorder Type 1 at age 19, and is dedicated to helping others deal with their mental health challenges. She is also a poet who uses her …

1
Infantile Spasms: The Facts, The Research, and The Hope for the Future 30:51

6M ago30:51

30:51

This week on Seizing Life® epilepsy researcher Dr. Chris Dulla provides information about infantile spasms, from detection and diagnosis to current research and future improvements in treatment. The post Infantile Spasms: The Facts, The Research, and The Hope for the Future appeared first on CURE Epilepsy.…

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