Best Epilepsy Foundation Podcasts (2025)

1
Navigating the Patient's Journey featuring Brenda Snow 57:59

9d ago57:59

57:59

Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses. You can find B…

1
The Role of AI in Medicine feat. Joe Lennerz, BostonGene 38:33

5M ago38:33

38:33

On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunolo…

1
Spreading PAH Awareness featuring Steve Smith 25:38

6M ago25:38

25:38

In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, bel…

1
All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point 26:49

7M ago26:49

26:49

In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, resea…

1
PKD and the Gift of Life, feat. Patient Advocate Valen Keefer 40:10

8M ago40:10

40:10

In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story. Connect with …

1
The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson 50:02

9M ago50:02

50:02

In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resilie…

1
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

10M ago42:39

42:39

This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: W…

1
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

10M ago19:48

19:48

In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their can…

1
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

11M ago33:03

33:03

In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect wi…

1
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC 34:52

11M ago34:52

34:52

In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…

1
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz 18:08

12M ago18:08

18:08

In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …

1
The MS Poltergeist, feat. Patient Advocate Jennifer Angus 43:48

1y ago43:48

43:48

In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Rega…

1
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale 36:30

1y ago36:30

36:30

In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…

1
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

1y ago27:37

27:37

In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since h…

1
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J. 38:13

1y ago38:13

38:13

This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a W…

1
Facts About Epilepsy Everyone Should Know 2 14:19

1y ago14:19

14:19

Could epilepsy be considered the same as intellectual disability?Is it feasible for someone to swallow their tongue during an epileptic seizure?Is it advisable to physically restrain someone having an epileptic seizure?What types of employment are suitable for individuals with epilepsy?Dr. Bisi Onyemechi, in a recent webinar, addressed and dispelle…

1
Facts About Epilepsy Everyone Should Know 22:10

1y ago22:10

22:10

Curious about #epilepsy but feel too intimidated to ask questions? Do you want to learn more about managing epilepsy and supporting your loved ones but don't know where to start? Then this podcast episode, "Facts about Epilepsy Everyone Should Know," is just for you!In this engaging and informative podcast, we'll debunk #myths, share essential #fac…

1
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

1y ago48:39

48:39

In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial f…

1
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx 25:12

1y ago25:12

25:12

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for ra…

1
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman 43:28

1+ y ago43:28

43:28

On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping t…

1
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

1+ y ago24:26

24:26

In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very f…

1
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

1+ y ago25:27

25:27

In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and…

1
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

1+ y ago24:23

24:23

For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" expe…

1
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

1+ y ago8:13

8:13

Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today. Read more about Justin's…

1
Give for Speech Campaign; the Power and Impact of Speech Therapy 7:11

2y ago7:11

7:11

In this podcast, we dive into the fascinating world of speech therapy and explore its crucial role in enhancing communication skills of children with neurological impairments, especially autism. Join us as we share a mother's pain, as she narrates her challenges in providing supportive care to her autistic son. We also invite you to join this cruci…

1
Video Modeling Techniques Effective in Teaching Children with Learning Disabilities 6:25

2y ago6:25

6:25

Are you a parent, guardian or caregiver to a child with special educational needs?Are you looking for best techniques to help your special child learn? In order to effectively aid your special needs child to learn skills with video modelling; number one, identify and target a skill you want the child to learn, number two, research to find videos th…

1
Potty Training Strategies for Children with Special Needs 15:14

2+ y ago15:14

15:14

This is part one of the potty training discourse. In this episode, you will learn strategies of helping your special child potty trained. Learn to "Discover" how your special child learns and "Demonstrate" or model to the child, the behavior you want him/her to learn. Let's get our special children potty/toilet trained!…

1
How to Support the Supporters, feat. The Courageous Parents Network 28:26

2+ y ago28:26

28:26

We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their websi…

1
Working Toward the Future, Feat. GACI Global and Inozyme Pharma 22:18

2+ y ago22:18

22:18

On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal miner…

1
The IRSF: 40 Years of Making Connections 26:46

2+ y ago26:46

26:46

Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you …

1
The 2022 Living Rare, Living Stronger Patient and Family Forum 18:55

3y ago18:55

18:55

In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world. Learn more about the Patient and Family Forum, taking place June 26 in Cle…

1
Getting the Support You Need, feat. Cancer Commons 16:29

3y ago16:29

16:29

In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique. To learn more about Cancer Commons, visit their website here. You can also conn…

1
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich 20:37

3y ago20:37

20:37

In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at [email protected]. You can also check out the SAMD9L mutation…

1
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust 18:48

3y ago18:48

18:48

In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research. Keep up with the Myrovlytis Trust and their new initiatives here: Myrovlytis Trust www.myrovlytistrust.org LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust Twitter: @Myrovlytis BHD Foundation www.bhdsyn…

1
Exciting Rare Disease Developments in the EU, feat. HAE Junior 18:54

3y ago18:54

18:54

Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the E…

1
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases 19:22

3y ago19:22

19:22

Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and …

1
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics 17:48

3+ y ago17:48

17:48

In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.By Patient Worthy

1
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant 19:05

3+ y ago19:05

19:05

This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.…

1
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries 23:37

3+ y ago23:37

23:37

In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy. To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj. Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients a…

1
Not Just Surviving, But Thriving With Pheo vs. Fabulous 51:36

3+ y ago51:36

51:36

In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endocrine tumor that produces adrenaline, characterized by symptoms such as rapid heartbeat and dangerously high blood pressure, among others. Topics discussed: self-advocacy, the importance of awareness, …

1
Hanging Onto Hope in the Face of AML 12:30

3+ y ago12:30

12:30

In this episode, we speak with Dave Cade, an acute myeloid leukemia patient who is in remission after an experimental treatment. We discuss keeping hope in the face of a tough diagnosis and the importance of support. Learn more about AML here.By Patient Worthy

1
The Importance of Connection With Jordan‘s Guardian Angels 28:05

3+ y ago28:05

28:05

In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome and how you can support this important nonprofit, check out their website here. Their podcast, "A Rare Reality," is available here or on your favorite podcast platform.…

1
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor 18:58

3+ y ago18:58

18:58

In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us. To learn more about FT218 and the clinical trials, …

1
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association 25:46

3+ y ago25:46

25:46

In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakn…

1
Effective Learning Strategies to Accommodating Kids with Seizure Disorders & Learning Disabilities 22:55

3+ y ago22:55

22:55

Repetition is key to improving learning experiences and outcomes of children with learning disabilities. Our guest, Mshelia Joan, is a special Educator in the city of Jos, Nigeria. Her passion is helping kids with diverse kinds of learning disabilities. She shares with us her experience teaching kids with learning disabilities.…

1
Seizure Disorder and Learning Disability Campaign: Advocacy Updates 4:50

3+ y ago4:50

4:50

According to UNESCO, reaching excluded and marginalized groups and providing them with quality education requires the development and implementation of inclusive policies and programmes.One of the pitfalls to successfully implementating special education policies is poor availability of trained special educators. We advocate that teachers should be…

1
Building the Connections with the SYNGAP Research Fund 33:23

3+ y ago33:23

33:23

This week, we speak with Mike Graglia from the SYNGAP Research Fund about their efforts in advocating for this underdiagnosed genetic condition. Find out more about SYNGAP and the SRF at SyngapResearchFund.org.By Patient Worthy

1
Seizure First Aid: What to do when a child has a Generalized Seizure episode 18:47

3+ y ago18:47

18:47

Seizure First Aid: What to do when a child has a Generalized Seizure episode. #firstaid #seizures #seizuredisorder #infantilespasms #health #children

1
Interview with Mrs Patience Olaiya. Overcoming Learning Disabilities through Speech Therapy 18:40

3+ y ago18:40

18:40

Did your child learn language late and/or have a limited vocabulary?Does your child confuse math symbols and misread numbers?Does your child have very messy handwriting or does he hold a pencil awkwardly?YOUR CHILD MAY BE BATTLING LEARNING DISABILITIESOur guest, a renown speech and language therapist, shares insights about the role of speech therap…

1
Now that my child has been diagnosed, what's next (A Mother's Determination) 16:36

3+ y ago16:36

16:36

Now that my child has been diagnosed...What's next?On the next episode of SeizureCare Podcast with Dr Chiggy, we will be talking about the steps to be taken in ensuring proper management and treatment...We will discuss therapies and medications, as well as the right mental attitude...Stay tuned...Join our Facebook communityhttps://www.facebook.com/…

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Epilepsy Foundation Podcasts

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