Best CURE Epilepsy Podcasts (2024)

1
Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein 37:15

11h ago37:15

37:15

ONCE UPON A GENE - EPISODE 235 Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein My guest, Craig Klein, has been living with Neuromyelitis Optics Spectrum Disorder (NMOSD) for 8 years. He shares his challenges, strengths and about his journey of resilience. EPISODE HIG…

1
Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd 44:52

2d ago44:52

44:52

ONCE UPON A GENE - EPISODE 234 Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd This new series, Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare …

1
Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing 8:42

9d ago8:42

8:42

ONCE UPON A GENE - EPISODE 233 Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing LINKS AND RESOURCES MENTIONED Project Findout https://projectfindout.org/ CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://ww…

1
The NORSE Institute: A Mother’s Loss Drives Awareness and Research into a Devastating Form of Epilepsy 34:10

10d ago34:10

34:10

After losing her son to a sudden and devastating form of epilepsy, Nora Wong founded the NORSE Institute to raise awareness and fund research. The post The NORSE Institute: A Mother’s Loss Drives Awareness and Research into a Devastating Form of Epilepsy appeared first on CURE Epilepsy.By CURE Epilepsy

1
Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC 27:36

1M ago27:36

27:36

ONCE UPON A GENE - EPISODE 232 Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC Abby Turnwald is a genetic counselor here to talk about genetic testing and the crucial role genetic counselors play in guiding families through the complexity…

1
The Power of Genetic Diagnosis - More Than Just a Label 11:48

1M ago11:48

11:48

By Effie Parks

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

1M 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
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick 36:55

2M ago36:55

36:55

ONCE UPON A GENE - EPISODE 230 Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick Nikki Stusick is the mom of a child with an initial VUS diagnosis and then a different pathogenic diagnosis. We talk about the complexities of balancing advocacy work, family life, when to choose one…

1
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber 35:10

2M ago35:10

35:10

ONCE UPON A GENE - EPISODE 229 Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber Frances Muenzer Pimentel and Sophia Zilber have united the Hope for PDCD Foundation and the Cure Mito Foundation to launch a global joint…

1
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum 51:51

2M ago51:51

51:51

ONCE UPON A GENE - EPISODE 228 Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselling author of Chasing My Cure: A Doctor's Race to Turn …

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

3M 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
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska 51:53

3M ago51:53

51:53

Connect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join…

1
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland 45:12

3M ago45:12

45:12

ONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their personal journey of having a child diagnosed with epilepsy.…

1
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman 46:33

3M ago46:33

46:33

ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibli…

1
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed 28:47

3M ago28:47

28:47

ONCE UPON A GENE - EPISODE 224 The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fighting for in the rare disease community that are pivotal t…

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

4M 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
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio 51:20

4M ago51:20

51:20

ONCE UPON A GENE - EPISODE 223 Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing research efforts, and improving the lives of rare epilepsy …

1
Krabbe Disease with Kasey Feldt 29:20

4M ago29:20

29:20

ONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for Krabbe disease, but also the newborn screening system so kids have a better chance at early detection. EPISO…

1
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay 38:03

4M ago38:03

38:03

ONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront of genetic sequencing and rare disease diagnosis. EPISO…

1
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action 17:01

4M ago17:01

17:01

ONCE UPON A GENE - EPISODE 220 A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. EPISODE HIGHLIGHTS Katie Scheid The beginnin…

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

5M 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
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini 43:25

5M ago43:25

43:25

ONCE UPON A GENE - EPISODE 219 Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini Amanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission. EPISODE HIGHLIGHTS What is your role at Genomics England and how did your career develop? I work at Genomics England as the Director of Clinic…

1
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child 53:26

5M ago53:26

53:26

ONCE UPON A GENE - EPISODE 218 James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, the importance of community and the boundless love that …

1
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade 51:07

5M ago51:07

51:07

ONCE UPON A GENE - EPISODE 184 More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a mutation in the SYNGAP1 gene. We'll talk about her uniq…

1
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell 55:26

5M ago55:26

55:26

ONCE UPON A GENE - EPISODE 217 Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell Terry Jo Bichell is a rare mom, neuroscientist and the founder of COMBINEDBrain, a nonprofit organization revolutionizing the approach to clinical treatments fo…

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

6M 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
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments 39:56

6M ago39:56

39:56

ONCE UPON A GENE - EPISODE 201 A Rare Collection - Five Advocacy Aces Share Their Conference Commandments EPISODE HIGHLIGHTS Melissa Hioco, STXBP1 DO: Offer a family hospitality room where parents can see the broadcast and stay involved in the conference. Provide sibling spaces and make them feel special. Spend the extra money to provide a buffet d…

1
Imran House and Junyun Lai Discuss CRISPR Screening in Immuno-Oncology 26:06

6M ago26:06

26:06

Imran House, Ph.D. and Junyun Lai Ph.D. are Senior Scientists at the biotech start-up, oNKo-Innate in Melbourne, Australia that focuses on developing immuno-oncology therapies. In this episode, they discussed what they do at oNKo-innate, their career transitions from leaving academics to entering the biotech industry, and how CRISPR is impacting ca…

1
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay 43:00

6M ago43:00

43:00

ONCE UPON A GENE - EPISODE 216 Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay Matt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than overcome the challenges that came with it— he has thrived because of it. He is the author of a new book, Sou…

1
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford 34:24

6M ago34:24

34:24

ONCE UPON A GENE - EPISODE 215 Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford Emily Crawford left her lifelong dream job of being a teacher to surrender to the demands of care-giving. She joins me to discuss identity loss and metamorphosis after becoming a parent to a medically…

1
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari 41:00

6M ago41:00

41:00

ONCE UPON A GENE - EPISODE 214 A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to share her personal story and also share her knowledge abo…

1
Finding Strength In Every Step 17:36

6M ago17:36

17:36

By Effie Parks

1
Best of Seizing Life 2023 30:13

7M 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

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

7M 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.…

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