A podcast for people with Neurofibromatosis (NF-1, NF2-SWN, and Schwannomatosis)--and the people who care for them.
Decoding NF
Claim This Podcastby Shane Smith
5.0(5 reviews)
6 episodes
Updated Weekly
Accepts GuestsHas SponsorsLocation 🇺🇸
Podcast Overview
A podcast for people with Neurofibromatosis (NF-1, NF2-SWN, and Schwannomatosis)--and the people who care for them.
Language
🇺🇲
Publishing Since
5/9/2024
1 verified contact email on file for Decoding NF
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Recent Episodes
November 24, 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.
September 13, 2024
The Art and Science of Facial Reanimation--A Deep Dive with Dr. Tessa Hadlock
<p>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.</p><p>00:00 Introduction and Guest Introduction</p><p>03:01 Dr. Hadlock's Background and Expertise</p><p>03:55 Understanding Facial Paralysis and Reanimation</p><p>06:42 Facial Paralysis in NF2 Patients</p><p>10:18 Treatment Options for Facial Paralysis</p><p>12:42 Surgical Techniques and Considerations</p><p>21:07 Physical Therapy and Botox for Facial Paralysis</p><p>31:44 Outcomes and Success Rates</p><p>40:16 Challenges in Medical Practice and Innovation</p><p>57:38 The Importance of Patient Advocacy</p><p>59:30 Conclusion and Closing Remarks</p><p>If you'd like to support the show, we now have a <a href="https://www.patreon.com/DecodingNF"><strong>Patreon membership</strong></a>! Sign up and get episodes <strong>over a week</strong> before they are released to the main feed!</p> <strong>Thanks to our monthly supporters</strong> <ul> <li>Waz</li> <li>Annette B.</li> <li>Brianna W</li> <li>Rosemary Anderson</li> </ul>
August 16, 2024
Genetics, Research, and Future Therapies for NF1 with Dr. David Gutmann
<p>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.</p><p>For a bit of background on RAS/RAF/MAPK here is a thorough and helpful video that explains cell signaling: <a href="https://www.youtube.com/watch?v=Pa11Jw0JAdk">The MAP Kinase (MAPK) signalling pathway</a></p><p>If you really want to delve into the details on this fascinating topic, here is another link that gets into the technical minutia: <a href="https://www.open.edu/openlearn/science-maths-technology/cell-signalling/content-section-3.6.1">The Open University -- Cell Signalling</a></p><p>During the interview, Dr. Gutmann references a paper his team recently published in collaboration with Michelle Monje's lab. That paper is <a href="https://pubmed.ncbi.nlm.nih.gov/38816530/">Nf1 mutation disrupts activity-dependent oligodendroglial plasticity and motor learning in mice</a></p><p>00:00 Introduction to the Episode</p><p>00:22 Meet Dr. David Gutmann</p><p>00:32 Dr. Gutmann's Research and Achievements</p><p>02:36 Interview Expectations and Technical Notes</p><p>04:53 Starting the Interview</p><p>05:07 Dr. Gutmann's Early Career and NF1 Research</p><p>07:11 Understanding Neurofibromin and RAS Pathway</p><p>09:27 Exploring Neurofibromin's Other Functions</p><p>20:28 Neurological Manifestations of NF1</p><p>21:45 Behavioral Disorders and NF1</p><p>28:10 Current and Future Treatments for NF1</p><p>32:06 The Future of NF Research</p><p>36:14 The Role of AI and Genomics in NF1</p><p>48:31 Challenges and Opportunities in NF Research</p><p>50:41 Closing Remarks and Optimism for the Future</p><p>53:45 Episode Conclusion and Acknowledgements</p><p>If you'd like to support the show, we now have a <a href="https://www.patreon.com/DecodingNF">Patreon membership</a>! Sign up and get episodes <strong>over a week</strong> before they are released to the main feed!</p> <strong>Thanks to our monthly supporters</strong> <ul> <li>Annette B.</li> <li>Brianna W</li> <li>Rosemary Anderson</li> </ul>
6 total episodes available
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Frequently asked questions
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- What is Decoding NF?
- How often does this podcast release new episodes?
This podcast updates weekly.
- Where can I listen to this podcast?
This podcast is available on 9 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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