Decoding NF

About Decoding NF

A podcast for people with Neurofibromatosis (NF-1, NF2-SWN, and Schwannomatosis)--and the people who care for them.

Publisher

Shane Smith

Category

health & fitness

Language

en

Explicit

No

First episode

9 May 2024

Latest episode

24 Nov 2024

Latest episodes

6 episodes in the feed.

1. 

   24 Nov 2024

   End of Season One

   Waz, Annette B., and Rosemary Anderson bid farewell to Season 1, setting the stage for Season 2's insights and discoveries in 2025.

2. 

   13 Sept 2024

   The Art and Science of Facial Reanimation--A Deep Dive with Dr. Tessa Hadlock

   My guest for this episode is Dr. Tessa Hadlock, a renowned facial plastic surgeon and expert in facial nerve disorders. Dr. Hadlock discusses her pioneering work in facial paralysis treatments, specifically focusing on conditions related to Neurofibromatosis Type 2 (NF2). The conversation delves into the various surgical and non-surgical options for facial reanimation, their associated risks, and long-term outcomes. Dr. Hadlock also emphasizes the importance of patient self-advocacy and the need for ongoing innovation and thorough tracking of medical results to improve quality of life for facial paralysis patients. 00:00 Introduction and Guest Introduction 03:01 Dr. Hadlock's Background and Expertise 03:55 Understanding Facial Paralysis and Reanimation 06:42 Facial Paralysis in NF2 Patients 10:18 Treatment Options for Facial Paralysis 12:42 Surgical Techniques and Considerations 21:07 Physical Therapy and Botox for Facial Paralysis 31:44 Outcomes and Success Rates 40:16 Challenges in Medical Practice and Innovation 57:38 The Importance of Patient Advocacy 59:30 Conclusion and Closing Remarks If you'd like to support the show, we now have a Patreon membership (https://www.patreon.com/DecodingNF)! Sign up and get episodes over a week before they are released to the main feed! Thanks to our monthly supporters Waz Annette B. Brianna W Rosemary Anderson

3. 

   16 Aug 2024

   Genetics, Research, and Future Therapies for NF1 with Dr. David Gutmann

   In this episode, my guest is Dr. David Gutmann, a leading neurologist specializing in Neurofibromatosis Type 1 (NF1). The conversation delves into Dr. Gutmann's groundbreaking research on the NF1 protein neurofibromin and its role in downregulating the RAS/RAF/MAPK cell signaling pathway. We explore various neurological issues associated with NF1, such as learning problems, brain tumors, and ADHD. Dr. Gutmann shares insights on current and future treatments, including MEK inhibitors and potential therapies targeting the tumor microenvironment. Additionally, we discuss the application of AI and machine learning in predicting disease risk and developing more personalized treatments. Our conversation underscores the importance of thinking about NF1 as a complex system and highlights the broader implications of NF research for other medical fields. For a bit of background on RAS/RAF/MAPK here is a thorough and helpful video that explains cell signaling: The MAP Kinase (MAPK) signalling pathway (https://www.youtube.com/watch?v=Pa11Jw0JAdk) If you really want to delve into the details on this fascinating topic, here is another link that gets into the technical minutia: The Open University -- Cell Signalling (https://www.open.edu/openlearn/science-maths-technology/cell-signalling/content-section-3.6.1) During the interview, Dr. Gutmann references a paper his team recently published in collaboration with Michelle Monje's lab. That paper is Nf1 mutation disrupts activity-dependent oligodendroglial plasticity and motor learning in mice (https://pubmed.ncbi.nlm.nih.gov/38816530/) 00:00 Introduction to the Episode 00:22 Meet Dr. David Gutmann 00:32 Dr. Gutmann's Research and Achievements 02:36 Interview Expectations and Technical Notes 04:53 Starting the Interview 05:07 Dr. Gutmann's Early Career and NF1 Research 07:11 Understanding Neurofibromin and RAS Pathway 09:27 Exploring Neurofibromin's Other Functions 20:28 Neurological Manifestations of NF1 21:45 Behavioral Disorders and NF1 28:10 Current and Future Treatments for NF1 32:06 The Future of NF Research 36:14 The Role of AI and Genomics in NF1 48:31 Challenges and Opportunities in NF Research 50:41 Closing Remarks and Optimism for the Future 53:45 Episode Conclusion and Acknowledgements If you'd like to support the show, we now have a Patreon membership (https://www.patreon.com/DecodingNF)! Sign up and get episodes over a week before they are released to the main feed! Thanks to our monthly supporters Annette B. Brianna W Rosemary Anderson

4. 

   12 Jul 2024

   The Role Of Service Dogs In NF With John Manth

   My guest this episode is John Manth, father of Leah Manth, who was diagnosed with Neurofibromatosis Type 2 (NF2-SWN) in 2007. John discusses their family's journey in seeking treatments and a cure for NF2, his extensive involvement in various NF organizations, and the impactful role of their service dog, Dasher. The conversation covers topics such as the training process for service dogs, the importance of service animals for individuals with disabilities, and the special relationship between Leah and Dasher. John also emphasizes the significance of community involvement and advocacy in the NF community. 00:00 Introduction 00:16 Meet John Math: Advocate and Father 00:43 John's Advocacy and Achievements 02:50 Interview with John Manth Begins 03:07 Leah's Diagnosis and Journey 03:45 The Role of Service Dogs 05:32 Meet Dasher: Leah's Service Dog 06:01 Training and Adaptation 08:05 The Amazing Adaptability of NF Patients 10:46 Legalities and Logistics of Service Dogs 18:40 Long-Term Outlook and Retirement of Service Dogs 23:35 The Bond Between Leah and Dasher 23:50 Training and Adaptation for Evolving Needs 24:59 Service Dogs for Various Disabilities 25:58 Heartwarming Stories of Service Dogs 28:16 Types of Working Dogs and Their Roles 31:00 Traveling with a Service Dog 32:33 The Reality of Owning a Service Dog 34:46 Future Considerations and Assistive Technologies 38:57 Getting Involved and Finding Support 42:15 Conclusion and Contact Information

5. 

   14 Jun 2024

   Strategies For Living With Chronic Pain With Dr. Frank Buono

   This episode features Dr. Frank Buono, an Associate Research Scientist and Lecturer at the Yale School of Medicine, discussing his research on utilizing digital technologies to assist with treatment for individuals with rare diseases like neurofibromatosis (NF), with a focus on managing chronic pain. Dr. Buono talks about his latest project, a mobile app called 'I Can Cope-NF' designed for chronic pain management in NF1 adults, its development process, preliminary positive results from a study conducted in 2022, and future plans for public release after ongoing trials. The conversation also touches on different aspects of chronic pain, including its psychological effects, various pain management strategies beyond pharmacological treatments (like cognitive behavioral therapy, mindfulness, physical therapy), and the importance of a multidisciplinary approach and community support for patients. Dr. Buono emphasizes the significance of self-advocacy, exploring alternative treatments, and the potential of digital tools to provide accessible care options for those with limited resources. 02:12 Understanding Chronic Pain in Neurofibromatosis 03:38 Exploring Alternative Pain Management Strategies 21:51 'I Can Cope NF' App for Chronic Pain 30:25 Towards a Holistic Approach in Pain Management 32:35 Exploring the Psychological Aspects of Chronic Pain 33:32 The Interconnection of Chronic Pain, Depression, and Anxiety 35:08 Effective Psychological and Physical Therapies for Chronic Pain 36:35 Personal Insights and the Power of Movement in Pain Management 40:27 The Challenge of Trying New Therapies and the Importance of Persistence 43:41 Highlighting the Role of Community and Self-Help Resources 50:23 Advocacy, Support Networks, and the Journey of Living with NF 56:26 Closing Thoughts and the Importance of Resource Accessibility Dr. Buono alluded to several books during the interview, here are some of the titles he'd like to highlight: Get Out of Your Mind and Into Your Life: The New Acceptance and Commitment Therapy (https://www.amazon.com/Get-Your-Mind-Into-Life/dp/1572244259) by Steven C Hayes, PhD The Chronic Pain and Illness Workbook for Teens: CBT and Mindfulness-Based Practices to Turn the Volume Down on Pain (https://www.amazon.com/Chronic-Illness-Workbook-Teens-Mindfulness-Based/dp/1684033527/ref=sr_1_1?s=books&ie=UTF8&qid=1549651602&sr=1-1&keywords=chronic+pain+workbook+for+teens) by Rachel Zoffness, PhD The Pain Management Workbook: Powerful CBT and Mindfulness Skills to Take Control of Pain and Reclaim Your Life (https://www.amazon.com/Pain-Management-Workbook-Powerful-Mindfulness-ebook/dp/B084JJ926N) by Rachel Zoffness, PhD The Mindful Self-Compassion Workbook: A Proven Way to Accept Yourself, Build Inner Strength, and Thrive (https://www.amazon.com/Mindful-Self-Compassion-Workbook-Yourself-Strength/dp/1462526780) by Kristin Neff PhD and Christopher Germer, PhD In addition, he wanted to link to several organizations: Children's Tumor Foundation (https://www.ctf.org/) NF Network (https://nfnetwork.org/) Pubmed (https://pubmed.ncbi.nlm.nih.gov/)

6. 

   9 May 2024

   Introduction

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

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Apple Podcasts (US)

5.0 / 5

5 ratings

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Guest appearances

Books guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.