Best Neurofibromatosis Podcasts (2024)

1
Erasing the Stigma of Neurofibromatosis 29:08

17d ago29:08

29:08

Have you ever heard of a genetic condition called neurofibromatosis, also known as NF? It’s one of the most common genetic disorders, affecting about 1 in 3000 people globally. NF causes different types of tumours to form in various parts of the body. Because so little is known about the condition, it’s often misdiagnosed, or not diagnosed at all. …

1
From Frustration to Advocacy: A Journey of Disability Rights and Social Change 26:10

11h ago26:10

26:10

In this powerful and emotive episode of our podcast, we sit down with an inspiring advocate for disability rights who began her journey at Leeds Uni in 2016. With the evolution of her blog into a force for societal transformation, she challenges us to rethink our perceptions of disability. Join us as we delve into topics such as Down Syndrome Day, …

1
Are Reading Disabilities Genetic? 42:15

6h ago42:15

42:15

Do you know a child who has difficulty spelling or sounding out words? Maybe they feel stressed or anxious when it comes to reading, or they try to avoid it altogether? These symptoms could be a sign of a reading disorder, which is the most common form of a learning disability. In this episode, we discuss the prevalence and impact of reading disord…

1
Introduction 3:22

19d ago3:22

3:22

Welcome to Decoding NF! This is just a brief introduction to the show.By Shane Smith

1
Untitled Episode 15:21

2d ago15:21

15:21

In this episode, Pete's Ascent Beyond Boundaries in Para climbing, where we delve into the extraordinary journey of Pete, an athlete with cerebral palsy who defies all odds in the competitive world of climbing. Pete's story is not just about scaling physical walls but also about overcoming societal attitudes and financial challenges that athletes w…

1
Can Exercise Slow the Progression of Parkinson’s? 37:15

6d ago37:15

37:15

Parkinson’s disease is the fast-growing neurological condition in the world. In Canada, more than 100,000 people are currently living with Parkinson's and 12,000 new cases are diagnosed every year. In this episode of Your Complex Brain, we discuss the latest science surrounding the benefits of exercise for Parkinson’s, including whether exercise ca…

1
Embracing Differences and Finding Community With Neurofibromatosis 25:51

25d ago25:51

25:51

"Embracing Differences and Finding Community With Neurofibromatosis" is a podcast episode that brings to the forefront the inspiring stories of individuals living with neurofibromatosis (NF). Join me as, I speak with Kristen, a personal trainer / senior manager at an advertising agency, from New York City, whose life has been shaped by the conditio…

1
25 Years of Momentum in Spinal Cord Injury Research 40:18

1M ago40:18

40:18

In 1995, actor Christopher Reeve was injured in a horseback riding accident, leaving him quadriplegic - paralyzed from the shoulders down. He became a tireless advocate and a passionate supporter of research. Christopher’s dream was for those living with spinal cord injuries to have a better quality of life, and one day to walk again. More than 25 …

1
Life with a brain tumour - Kiera Mitchell 18:05

1M ago18:05

18:05

In this episode, I speak to Kiera about being diagnosed with a brain tumour. Immerse yourself in our conversation which looks at the challenges in getting support and the impact of diagnosis on friends, family, and how to live well and embrace disability. highlights of each Podcast episode: The onset of headaches & the path to diagnosis Coming to T…

1
Kelly Gordon on Transforming Disability Inclusivity in the Creative World | Empowering Voices 34:37

2M ago34:37

34:37

Join me as for this episode of the Rights Upfront podcast as I speak to Kelly Gordon, a wheelchair user, mother, and a trailblazer in advocating for disability inclusivity in creative industries. Kelly shares her transformative journey from the competitive world of football to becoming a voice for change in advertising and creative production. Epis…

1
Reduce Your Chances of Alzheimer’s. Here’s How. 35:04

2M ago35:04

35:04

In the time that it takes to say this sentence – three seconds – someone in the world will develop dementia, a group of symptoms impacting memory, thinking, mood, behaviour and the ability to complete everyday tasks. Alzheimer’s is the most common form of dementia. With people living longer, even into their 90s and beyond, dementia is becoming the …

1
Creating a Global Movement and Changing Perceptions of Disability 19:10

1M ago19:10

19:10

In this episode, I sit down with Joe, the inspiring force behind Dystrophy Dad and Sons of Dystrophy, to explore his transformative journey through the world of muscular dystrophy. Joe candidly shares how his personal experiences with the condition evolved into a global mission to connect and empower others affected by different forms of dystrophy.…

1
The Lonely Brain 24:44

2M ago24:44

24:44

In a sweeping 2023 report, the US Surgeon General, Vivek Murthy, declared loneliness an epidemic and a public health emergency. According to the report, loneliness and isolation can lead to a significant increase in mental health disorders, such as anxiety and depression, as well as a nearly 30% increased risk of heart disease, stroke and among old…

1
Madelyn's Journey with POTS and Ehlers-Danlos Syndrome 31:58

3M ago31:58

31:58

In this episode I meet Madelyn, a 21-year-old advocate from Minnesota, bravely living with postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS). Madelyn shares her intimate battle with these invisible chronic illnesses, revealing the day-to-day adversities she overcomes and the triumphs that define her resilient spirit.…

1
Season 3 of the award-winning 'Your Complex Brain' podcast is back! 1:00

3M ago1:00

1:00

We are once again bringing you inside UHN’s Krembil Brain Institute, one of North America's largest and most innovative neurological centres, to meet the scientists & physicians advancing discovery, the patients who inspire us, and the care teams who support them. This season, we’re exploring some big new research in brain health, including: What y…

1
Danielle's Journey: Embracing Identity and Advocacy in Disability Rights 32:18

3M ago32:18

32:18

Join us for this enlightening episode with Danielle from Boston, who shares her vibrant journey as a disability advocate. Despite living with an unidentified muscle disease, Danielle's narrative is one of humor, resilience, and empowerment. We delve into the evolution of disability rights, the influence of films like "Crip Camp," and the digital er…

1
Embracing Authenticity: Amit Ghose 23:11

3M ago23:11

23:11

In this epiosode, I am joined by Amit Ghose, who opens up about his life with neurofibromatosis type 1 (NF1), a condition that's shaped his identity and advocacy journey. Amit shares the highs and lows, from the stinging stigma he faced growing up to the unconditional support from his family and wife, which has been a cornerstone of his resilience.…

1
Dr. Kathryn Curtis' 5-Minute breathing practice 6:01

6M ago6:01

6:01

Breathing exercises are simple techniques can help improve your overall well-being by promoting relaxation, reducing stress, and increasing mindfulness. Listen to this original 5-minute 'Breathing Space' practice created by Dr. Kathryn Curtis for listeners of Your Complex Brain. Dr. Kathryn Curtis is a clinical psychologist at the Comprehensive Int…

1
Harry Forestell on his Deep Brain Stimulation surgery for Parkinson's 13:45

7M ago13:45

13:45

Harry Forestell is a journalist with CBC Television. In 2013, he noticed a tremor in his right hand and was unsure what it was. It was later determined to be Parkinson's disease. He was referred to Dr. Tony Lang and the team at Toronto Western Hospital, a movement disorder clinic. They confirmed the diagnosis and began treatment. The symptoms of th…

1
Why Fran Rider has donated her brain post-mortem to the Canadian Concussion Centre 11:32

7M ago11:32

11:32

Fran Ryder is the president of the Ontario Women's Hockey Association and has been involved in women's hockey for many years. She has played and volunteered in various capacities in the sport. She has also been involved in research and initiatives related to spinal injuries and concussions in hockey, working closely with Dr. Charles Tator, a world-…

1
Natalie Ladly on parenting a child with special needs & the importance of supporting research 14:06

7M ago14:06

14:06

Natalie Ladly is the president and fundraising chair for CDKL5 Canada. She lives in Heathcoate, a town outside of Collingwood, Ontario, with her husband Eric and their three children: Brynn, Reece, and Cullen. Brynn has CDD, a rare disease that prevents the brain from developing normally. She was diagnosed with the disease at nine months old, and s…

1
Why Jack Conway is participating in a VR research trial to improve his vision after a brain tumour 10:11

8M ago10:11

10:11

Jack Conway, a 19-year-old from Toronto, Canada, is a huge fan of video games and roller coasters. His family includes his mom, Kim, his dad, Steve, and his older brother, Brian. Jack plays a variety of video games, from Call of Duty to Minecraft, and he loves roller coasters. He also has a vision impairment due to a brain tumor he had when he was …

1
Lindsay Bongard-Batori on losing her mom Barbara to Alzheimer's 17:55

8M ago17:55

17:55

Lindsay's mother Barbara had Alzheimer's disease. Lindsay, her brothers, and her father noticed changes in her mid-sixties. They started noticing her repeating herself and she stopped coming to the pool with them when they went to visit her and their dad in Florida. She also forgot where she parked her car and had to ask for help. Her memory was no…

1
What Lara Pingue wants you to know about living with chronic pain 14:55

9M ago14:55

14:55

Lara Pingue shares her story about living with chronic back pain and the challenges of getting a diagnosis and finding effective treatment. She describes the initial onset of her pain and the various treatments she tried, including physical therapy, chiropractic care, and prescription medications. She also discusses the impact of the pain on her da…

1
How Nikki Ashworth's epilepsy diagnosis changed her life 18:42

9M ago18:42

18:42

As a child, Nikki experienced seizures that she did not realize were seizures. She would feel "other" and disconnected from the world. Her earliest seizure memory is from when she was six years old, triggered by looking out the window of her parent's house. She would sometimes go to the window to see if she would have a seizure. Today, her seizures…

1
Farrah Schwartz's take on stress and the importance of prioritizing your mental health 15:08

10M ago15:08

15:08

Farrah Schwartz is the manager of Patient Education and Engagement at UHN. Her work entails assisting patients in actively participating in their care and improving organizational processes. The Patient Education and Engagement program provides resources, training, and coaching to help Team UHN engage patients in their care. They are also working o…

1
Season 2 Recap 0:51

10M ago0:51

0:51

In the second season of Your Complex Brain, join us on a thrilling journey as we delve into the boundless realm of neuroscience, brain health, and ground-breaking research and its impact on our lives. Through thought-provoking discussions, expert interviews, and captivating patient stories, we unravel the mysteries of our brain. The Your Complex Br…

1
Top 5 Science-Based Tips to Keep Your Brain Fit & Healthy 59:07

10M ago59:07

59:07

From new Alzheimer’s drugs, to novel treatments for brain cancer, to chronic pain, many of us feel overwhelmed by the sheer volume of health news in the media and confused about what to believe - and how it applies to our own health. In this special episode of Your Complex Brain - our last of the season - we bring back five of our featured UHN brai…

1
Chronic Pain & The Brain 56:05

11M ago56:05

56:05

More than eight million Canadians are currently living with the effects of debilitating chronic pain. In this episode, we discuss the connection between chronic pain and the brain, including the latest & most effective treatments, the stigma - how do you study and treat something that you often can’t see? And, is there a way to build ‘pain resilien…

1
Unraveling the Genetics of a Rare Disease 45:16

11M ago45:16

45:16

When Brynn Ladley was born, she was a smiling, happy and healthy baby, hitting all of her developmental milestones. Then, at six weeks old, she began having seizures and eventually was diagnosed with CDKL5, a rare and debilitating genetic disorder that has no cure. Upon Brynn’s diagnosis, her mother Natalie became an advocate and connected with Dr.…

1
The Truth About Concussion 51:37

12M ago51:37

51:37

Every year, 40 million people worldwide sustain a concussion – a type of traumatic brain injury caused by a hit or jolt to the head. We often hear about concussions in the context of sports, but most occur as a result of everyday life, from running or biking, accidental falls and motor vehicle accidents. While the vast majority of those who suffer …

1
The Mystery of our Memory 50:25

12M ago50:25

50:25

When you think about your favourite memories, what comes to mind? Is it the championship win at your high school football game? Your child’s first words? Or the lyrics to a song you loved? In this episode, our experts tackle the big & thought-provoking questions, such as: How does our brain log & store memories? Where do memories go as we age? And …

1
Using Virtual Reality to Restore Vision 45:59

1y ago45:59

45:59

What happens when a vision researcher has a chance meeting with a pediatric oncologist and that collaboration leads to unexpected and promising results? In Episode 5 of Your Complex Brain, we’re talking about a homegrown vision rehabilitation program helping young brain cancer survivors, whose sight has been impacted by their tumours, improve their…

1
A New Theory of Alzheimer’s 50:18

1y ago50:18

50:18

Whether as a patient, a caregiver, a neighbour or a friend, chances are, one day, we will all be touched by Alzheimer’s or dementia. This disease steals our memories and cruelly robs us of our loved ones, often when we need them the most. But, there is hope and momentum in the world of Alzheimer's research. In fact, a new theory suggests that Alzhe…

1
The Future of DBS 48:31

1y ago48:31

48:31

Deep brain stimulation (DBS) is complex brain surgery in which electrodes are placed at strategic, predetermined targets within a patient's brain. The electrodes are then connected to a battery pack which is surgically inserted under the skin of the chest, like a pacemaker. When DBS was first introduced as a treatment option for people living with …

1
A New Era in Women's Brain Health: Closing the Gap on Delayed Diagnosis 47:58

1y ago47:58

47:58

Women make up nearly half of the world's population and have higher rates of neurological disorders, yet there is still a gap when it comes to better understanding and treating women living with brain-related illnesses. Many women also face systemic barriers and biases when they seek help, often leading to a delay in diagnosis and treatment. Featur…

1
Is Stress Contagious? 44:45

1y ago44:45

44:45

In a world that appears to be becoming more and more divisive, there's one thing we can all agree on. As a society, we are stressed out. Whether it's financial pressures, family or work obligations, or even just finding time for yourself in a never-ending tornado of to-do lists, stress is everywhere and it's not going away. We often talk about the …

1
Season 2: Your Complex Brain 2:19

1y ago2:19

2:19

Well, it’s no surprise. Since last season, our brains haven’t gotten any less complex! But that just means there are even more stories to share about the mysteries, myths and science behind how our brains work, and what keeps our brains healthy and fit. On Season 2 of our podcast Your Complex Brain, we’ll highlight the latest research, technology a…

1
Check out UHN’s Behind the Breakthrough podcast 0:47

1+ y ago0:47

0:47

We’ll be launching Season 2 of the Your Complex Brain podcast next spring and we are so excited to bring you even more fascinating topics and inspiring stories about the most complex and fascinating organ in your body – your brain. Until then, please check out our friends at Behind the Breakthrough, a podcast hosted by Christian Cote, showcasing th…

1
What scientists are learning about COVID-19 and the brain 45:21

2y ago45:21

45:21

It’s been more than two years since Susie Goulding contracted COVID-19. But, like many others experiencing long COVID, her ordeal is far from over. On today’s episode of Your Complex Brain, Heather explores what the medical and science communities are learning about the long-term impacts of COVID-19 – and all the mysteries that remain. After hearin…

1
The most painful brain disease you’ve never heard of 48:01

2y ago48:01

48:01

Imagine not being able to brush your teeth, eat a sandwich or cuddle your children because of the intense pain. That’s the reality for many people living with trigeminal neuralgia, an unrelenting form of chronic facial pain. For many of these patients, a smile, a kiss, or even a gust of wind can unleash a throbbing so severe, some describe it as a …

1
How patient advocacy is redefining Parkinson’s research 46:06

2y ago46:06

46:06

More than 100,000 Canadians are living with Parkinson's, a progressive brain disease that can impact mobility, cognitive function and speech. In this episode, Heather explores what it means to not just live with Parkinson’s, but to ‘live well,’ with meaning and purpose. She meets with two patients currently living with Parkinson’s, who are on a mis…

1
Psychedelics and the Mental Health Revolution 28:39

2y ago28:39

28:39

More than 50 years after emerging as a potential treatment for anxiety and depression, addiction, post-traumatic stress disorder and other chronic illnesses, psychedelics appear to be making a comeback. But where does the research stand currently on psychedelics and what do we really know about how these compounds may affect the brain? With the num…

1
Revolutionary advances in spinal cord injury 37:18

2y ago37:18

37:18

That mysterious back or neck pain you’ve been experiencing might just be Degenerative Cervical Myelopathy (DCM) – a progressive condition that is the most common cause of spinal cord injury. Left untreated, DCM can lead to permanent nerve damage, resulting in paralysis and a drastic increase in the chance of a more serious spinal cord injury, later…

1
Meet the woman who wants to cure brain cancer 44:07

2y ago44:07

44:07

Glioblastoma is the most common and most aggressive type of malignant brain tumour. It strikes suddenly, often in the prime of life, and is a devastating diagnosis for patients and loved ones. But innovative new research, such as a blood test to detect and diagnose brain cancer, is showing promise and bringing hope to a field in desperate need of n…

1
The quest to solve the concussion problem 39:35

2y ago39:35

39:35

Rowan Stringer was a 17 year-old rugby player who sustained several concussions over a series of matches, before passing away in 2013. Her family, and others like them, are fighting hard to make sure something like this never happens again, through education and advocacy. But there is currently no method for accurately diagnosing a concussion or pr…

1
Can listening to Mozart help stop seizures in epilepsy patients? 30:58

2y ago30:58

30:58

Mozart was 25 years old when he composed his Sonata for Two Pianos in D major. Hundreds of years later, his enchanting melody is offering hope to those living with epilepsy, a brain disease often characterized by debilitating seizures. A new study is looking at the impact of this Mozart Sonata on reducing seizure frequency in people with epilepsy. …

1
The rise of stroke in young adults 32:23

2y ago32:23

32:23

The medical after-effects of a stroke can be mild or severe. But for young survivors, the consequences of returning to their lives after a stroke, can be just as devastating. In fact, only half of stroke patients under the age of 65 ever return to work – and far more cope with depression, anxiety, and extreme fatigue. On today’s episode, Heather me…

1
What's it going to take to cure Alzheimer's? 25:22

2y ago25:22

25:22

With the controversial approval of Alzheimer’s drug Aducanumab in the United States, we speak to neurologist and medicinal chemist Dr. Donald Weaver, to break down the science, sift through the hype, and help us understand why it’s so difficult to diagnose and treat a disease that affects more than 55 million people worldwide. As the co-Director of…

1
Introducing: Your Complex Brain 2:04

2y ago2:04

2:04

Explore the myths, mysteries, and medical breakthroughs of the most complex and powerful organ in your body – your brain. Weaving together expert interviews with heartfelt, inspiring snapshots of the patients and family members in the middle of it all, Heather Sherman dives into the latest science on Alzheimer’s, Parkinson’s, epilepsy, stroke, conc…

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Neurofibromatosis Podcasts

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