Podcasts about Neurofibromatosis

In this week's podcast, Neurology Today's editor-in-chief highlights articles on the newly approved drug for neurofibromatosis 1 with plexiform neuromas in adults, how neurology practices are integrating with multiple subspecialties, and the impact of federal cuts to DEI grants and research.

In this episode of the Re-Crap, Tara and Lindsey discuss various topics including their personal running experiences, the excitement of March Madness, and the challenges faced during races. They introduce guest Katie Pisani, who shares her journey with neurofibromatosis and her commitment to fundraising for the Children's Tumor Foundation. The conversation highlights the importance of community in running, personal stories of triumph and challenges, and future race plans, culminating in a light-hearted yet meaningful discussion about the joys and struggles of being part of the running community.After the Re-Crap, stick around to hear from Eric and Six Star Erika as they discuss the recent March Madness music competition, highlighting the surprising outcomes, the winner and the excitement surrounding the event. They also tease upcoming changes and developments in their podcast, celebrate birthdays, and share light-hearted banter, creating an engaging and entertaining atmosphere for their listeners.Chapters00:00 Running and Coaching Experiences03:04 Half Marathon Adventures06:06 Guest Introduction and Race Recap09:08 Community and Race Atmosphere12:06 Unique Running Experiences15:05 Katie's Running Journey and Streaks18:17 Boston Marathon Experience24:40 Running Memories and Experiences26:11 The Importance of Support During Races27:56 Reflections on the Boston Marathon28:47 The Hamster Wheel Experience32:53 Cupid's Undie Run and Fundraising37:34 Understanding Neurofibromatosis (NF)42:17 Upcoming Races and Goals45:07 Community and Support in Running52:09 March Madness54:32 Final Four Highlights and Disappointments57:36 Exciting Announcements and Future Plans59:32 Celebrating Birthdays and Closing ThoughtsEric's NYC Marathon Fundraiser - Team FORCE, a dynamic organization that supports the hereditary cancer community Erika's Chicago Marathon Fundraiser - for American Foundation for Suicide Prevention in memory of her brother, Nick Strava GroupLinktree - Find everything hereInstagram - Follow us on the gram YouTube - Subscribe to our channel Patreon - Support usThreadsEmail us at OnTheRunsPod@gmail.com

Featuring an interview with Dr Christopher L Moertel, including the following topics: Overview of neurofibromatosis type 1(NF1) (0:00) Cancer in NF1 (8:38) Dermatologic manifestations of NF1 (16:57) Treatment options for NF1 (20:43) Malignant peripheral nerve sheath tumors (MPNST) (25:14) FDA-approved MEK inhibitors for NF1 plexiform neurofibromas (28:36) Specializing in NF (44:44) CME information and select publications

Featuring a slide presentation and related discussion from Dr Christopher L Moertel, including the following topics: Overview of neurofibromatosis (0:00) Common clinical manifestations of neurofibromatosis type 1 (NF1) (14:13) Role of MEK inhibitors in the management of NF1 plexiform neurofibromas (29:30) CME information and select publications

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

Grab a cafe au lait and settle in for a nerve-rackingly good conversation with Dr. Carlos Prada, Pediatric Genetics specialist at Northwestern University's Lurie Children's Hospital. Dr. Prada walks us through the most common presentations of NF1, the recently updated diagnostic criteria, and important follow-up screening exams and treatment options. It's an episode so good, even your nerves will be on edge!

Dr Christopher L Moertel from the University of Minnesota in Minneapolis discusses the clinical presentation of and optimal management strategies for plexiform neurofibromas and malignancies associated with neurofibromatosis type 1. CME information and select publications here.

In this episode of Absolute Gene-ius, Dr. C. Dustin Rubinstein takes us inside the world of advanced genome editing, where cutting-edge tools like CRISPR and digital PCR are helping shape the future of biomedical research.As the Director of the Advanced Genome Editing Laboratory at the University of Wisconsin-Madison, Dr. Rubinstein shares how his lab develops genetically engineered pig models to study diseases like neurofibromatosis and cancer, providing researchers with more clinically relevant models than traditional small animals. He explains how digital PCR plays a crucial role in confirming genome edits with absolute precision, eliminating the ambiguity that often comes with qPCR and sequencing alone. The discussion dives into the advantages of dPCR for copy number variation analysis and gene editing confirmation, emphasizing the importance of multiple complementary technologies in modern molecular biology.Beyond the science, Dr. Rubinstein reflects on his career path, the value of mentors, and the unpredictable nature of scientific discovery. He also joins in on some lighthearted lab humor and shares his most embarrassing (and proudest) moments in research. Tune in for an insightful and entertaining look at the intersection of gene editing, career evolution, and the future of molecular biology.Visit the Absolute Gene-ius pageto learn more about the guests, the hosts, and the Applied Biosystems QuantStudio Absolute Q Digital PCR System. 

I sit down with Katie, who has been living with Neurofibromatosis Type 1 (NF1), a rare genetic condition known for its tumor-growing tendencies. Diagnosed at a young age, Katie's journey with chronic illness began at just four years old. By the time she was 12, her spine had crushed her spinal cord, leading to a life-altering spinal cord injury. Alongside NF1, Katie also manages Scoliosis, chronic pain, and fatigue, challenges that have shaped her life in profound ways.We dive into Katie's medical journey, from the surgeries and treatments she's undergone to manage mobility and pain, to the therapies that have helped her navigate daily life. She shares the emotional and mental toll of living with chronic illness, how she has learned to advocate for herself within the medical system, and the evolution of her relationship with her body.Katie also opens up about the feelings of being a burden that many with chronic illness experience, and how she counters these thoughts with self-love and self-care. Whether you're facing a similar diagnosis or simply seeking insight into resilience and self-advocacy, Katie's story is one of strength, perseverance, and hope!Find Katie :Instagram

A Different Man This week we are looking A Different Man, at a film that takes some pretty bold and experimental swings at a subject that many would be uncomfortable with; facial difference and the experiences of the people who live with it. Sebastian Stan takes on the role of Edward; a shy actor who has facial difference (it is not mentioned but it seems to be Neurofibromatosis type 1 or NF1). His life is upended when he tries an experimental procedure and suddenly his face is no longer different. It's multi layered, complex and very very odd. The whole team is in for this one and there's plenty to talk about here. Enjoy! Synopsis An aspiring actor undergoes a radical medical procedure to drastically transform his appearance. However, his new dream face quickly turns into a nightmare as he becomes obsessed with reclaiming what was lost. https://youtu.be/sIK2LCOmz8o A huge thank you to all our wonderful weirdos who tune into to each episode of the show, especially those of you who have facial difference or in fact, any kind of difference... who join in on the live-chat during the Twitch stream this week (and every week!). If you haven't done so before join us next week for our live show 7:30pm next Tuesday! Special love and thanks goes to those who have financially bolstered this podcast via dropping their typewriter into our Ko-Fi cup and now also by subscribing on Twitch! Your generosity is always appreciated! If you feel so inclined drop us a sub! The more subs we get the more  emotes, you get! Every bit of your support helps us to keep the show on the air! Don't fret if you can't be there for the recording though as you can catch them on Youtube usually later that very night. Make sure to subscribe so you don't miss them! https://youtu.be/_9CmC5Rmsdw?si=Tbk2Y8rJnDDbR7Dz WE WANT YOUR FEEDBACK! Send in voicemails or emails with your opinions on this show (or any others) to info@theperiodictableofawesome.com Please make sure to join our social networks too!  We're on: Youtube: https://www.youtube.com/user/TPToA/ Twitter: www.twitter.com/TPToA Facebook: www.facebook.com/PeriodicTableOfAwesome Instagram: www.instagram.com/theperiodictableofawesome/

Understanding and Combating Neurofibromatosis: Insights from the Children’s Tumor Foundation (Good2Give Podcast, Episode 14) This episode of the Good2Give Podcast, hosted by Maria Walden and DePriest Waddy of the Community Foundation for Northeast Georgia, features guests Kate Kelts, Senior Manager of Patient Education and Engagement, from the Children’s Tumor Foundation, and Mark Oppenheimer, CEO of Modern […]

The Promise of Discovery Season 5, Episode 3 Neurofibromatosis Type 1 (NF1) is a neurodevelopmental disease which affects about 100,000 people in the US. Around 80% of these patients experience cognitive and intellectual impairments which are unaffected by currently approved therapies for NF1. A recent genetic study from our lab identified an association between the NF1 disease and a receptor protein called metabotropic glutamate receptor 7 (mGlu7). This project investigates how using small molecules to augment mGlu7 function could help identify new therapies for NF1 patients struggling with cognitive impairments. Featuring: Harrison Parent, Ph.D. Candidate- Niswender Lab, Department of Pharmacology, Vanderbilt University School of Medicine Interviewer: Colleen Niswender, Ph.D., Associate Professor of Pharmacology; Director of Molecular Pharmacology, Warren Center for Neuroscience Drug Discovery, and a Vanderbilt Kennedy Center Member

Think of the most resilient person you know. Now, allow me to introduce my cousin Meredith Harris to you.  Meredith recently shared her story at her church - and I was so moved and proud of her that I wanted to share it with as many people as possible. Take a listen, and I know you'll feel the same way.

Pastor Matt shares a powerful testimony of a young man named "Johnny Boy" in a youth group, who despite dealing with a rare, incurable disease, found purpose and faith in Christ, inspiring all around him by becoming the light of the world as Jesus instructed.

Neurofibromatosis, also known as NF, is one of the most common genetic disorders affecting about 1 in 3000 people globally. However, little is known about the condition causing it to often be misdiagnosed or go undiagnosed. Neurofibromatosis causes different types of tumors to form in various parts of the body.In this bonus episode, Dr. Ryan Thomas, a family physician and Clinical Associate at UHN's Elisabeth Raab Neurofibromatosis Clinic—the only adult NF clinic in Canada—shares his personal journey with NF. Diagnosed in his late twenties, Dr. Thomas underwent a life-changing surgery to remove a large tumor in his chest, just two months before his wedding. His experience provides a unique perspective on the condition, allowing him to connect deeply with his patients.Additional ResourcesCanadian First : UHN Opens Multidisciplinary Clinic on Genetic DisorderElisabeth Raab Accelerator of Science to End NeurofibromatosisNeurofibromatosis OntarioDr. Gelareh Zadeh's lab – link to more info about the Elisabeth Raab Neurofibromatosis ClinicChildren's Tumour FoundationThe Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembilTo get in touch, email us at krembil@uhn.ca or message us on social media:Instagram - @krembilresearchTwitter - @KBI_UHNFacebook - https://www.facebook.com/KrembilBrainInstituteThanks for listening!

Interview with Kavita Y. Sarin, MD, PhD, author of Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1. Hosted by Adewole S. Adamson, MD, MPP. Related Content: Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1

Interview with Kavita Y. Sarin, MD, PhD, author of Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1. Hosted by Adewole S. Adamson, MD, MPP. Related Content: Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1

Very often, when a newborn is diagnosed with the genetic condition called Neurofibromatosis which can lead to tumors being formed on nerve endings, these tumors turn out to be benign. Unfortunately , Jessica Messer's son , who was born with this genetic condition had a bulging eye that eventually was diagnosed as Embryonal Rhabdomyosarcoma. Bennett fought this disease as long as he could before passing away at the tender age of 2 years old in February of 2023.

In today's Deep Dive episode, Amit Ghose shares his personal experiences overcoming challenges related to disability representation, cultural obstacles in interracial relationships, and self-doubt. This conversation highlights the importance of mentors, self-acceptance, and purpose-driven actions in navigating these challenges. Highlights Amit's Journey and Disability Advocacy Amit's journey encompasses significant transitions and personal growth. Moving from a career in sales and marketing to disability advocacy was ignited by a profound message from a girl sharing his condition, neurofibromatosis. His journey is driven by pride in his visible difference, motivating him to positively impact lives and inspire others along the way. Childhood Struggles and Family Support In his childhood, Amit faced loneliness and insecurity, which transformed when he discovered cricket, finding a sense of identity through the sport. Despite these challenges, his father provided unwavering support, treating him normally despite his visible disability. However, the loss of his father was emotionally profound, shaping his resilience and approach to life's obstacles. Resilience, Relationships, and Cultural Acceptance Amit emphasizes the importance of support networks and taking challenges one day at a time. He finds solace in music and walks as coping mechanisms, though he admits to struggling with self-doubt and the pursuit of meaningful relationships. Despite initial family opposition fueled by societal pressures, his marriage eventually led to gradual acceptance and understanding within both families, bridging cultural gaps and fostering deeper connections. Advocacy for Inclusion and Empathy Reflecting on societal stigma and the cultural shift towards inclusion, Amit advocates passionately for empathy and inclusivity towards people with disabilities. He believes in addressing systemic issues behind individual actions, drawing from personal experiences to promote a more compassionate society. Living with Neurofibromatosis and Inspiring Others Living with neurofibromatosis, Amit navigates medical and religious questions regarding family planning with his wife. They lean on positive energy and spirituality to cope with their condition, finding hope and purpose in inspiring others despite the challenges they face.   Resources: Amit Ghose: Childhood Tumour Trust: The Brain Charity:  

One of our OG listeners, Joe K, stopped by to hang out with us while we discussed all manner of things, such as the gigilo business, being a vodka guy, tens of dollars to buy Boston Beer, hypothetical tipping situations, shit talking on Twitter, the experience that is Weekly Pint, everything is an RTD, tubular meats (of course),  what is a sling, and who Gnome's going to fight at Missing Linck Fest. Brink for a Cause supporting The Children's Tumor Foundation - July 25, 2024 Blue Ash Food Truck Festival at Summit Park - June 14, 2024 - https://www.facebook.com/events/1196034891362723 To donate directly to the Children's Tumor Foundation - https://www.ctf.org/ Neurofibromatosis affects 1 in every 2000 births ----- This episode covers the following shows : Miami Vally Craft Beer Podcast - S1 Ep12 with Craft Parenting Podcast and Blog The Weekly Pint - Ep 215 - Sorry, I Was Eating Meat and Not Showering Brew Skies Booze Brews Barstool Perspective News - 5/27/2024 - Odd moves (and rumors)in the beer industry ----- What we drank :  Troegs - Grand Cacao - Chocolate Milk Stout Northern Row - Tosser - ESB  Phase Three Brewing - Lost In the Moment - West Coast IPA Country Boy Brewing - Shotgun Wedding - Brown Ale aged on Vanilla Beans Rhinegeist - Expressionism - American IPA Listermann Brewing - Don't Talk Shit About Norwood - American Pale Ale ----- Episode recorded on 5/28/2024 at our amazing podcast host, Higher Gravity Summit Park! https://highergravitycrafthaus.com/ Disclaimer: The views and opinions expressed by Truth, Beer, and Podsequences are those of the participants alone and do not necessarily reflect the views or opinions of any entities they may represent. ------  Check out our other podcast where we tell you all about the upcoming Cincy Beer Events! https://podcasters.spotify.com/pod/show/truthbeerpod Links to everything at http://truthbeerpod.com/ Find us on all the social medias @ TruthBeerPod Email us at TruthBeerPod@gmail.com Subscribe, like, review, and share! Find all of our episodes on your favorite Podcast platform or https://www.youtube.com/@TruthBeerPod ! Buy us a pint!  If you'd like to support the show, you can do by clicking the "One-Time Donation" link at http://truthbeerpod.com ! If you want exclusive content, check out our Patreon!  https://www.patreon.com/TruthBeerPod If you'd like to be a show sponsor or even just a segment sponsor, let us know via email or hit us up on social media! ----- We want you to continue to be around to listen to all of our episodes.  If you're struggling, please reach out to a friend, family member, co-worker, or mental health professional.  If you don't feel comfortable talking to someone you know, please use one of the below resources to talk to someone who wants you around just as much as we do.   Call or Text 988 to reach the Suicide and Crisis Lifeline Chat with someone at 988lifeline.org http://www.988lifeline.org ----- Our Intro, Outro, and most of the "within the episode" music was provided by Gnome Creative. Check out www.GnomeCreative.com for all your audio, video, and imagery needs! @gnome__creative on Instagram @TheGnarlyGnome on Twitter https://thegnarlygnome.com/support http://gnomecreative.com http://instagram.com/gnome__creative http://www.twitter.com/TheGnarlyGnome

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. UHN is home to the Elisabeth Raab Neurofibromatosis Clinic, the only adult NF clinic in Canada. We discuss the clinic and the exciting research happening in the field of NF. But, for many people living with the condition, the stigma is often as challenging as the illness. Featuring: Dr. Suganth Suppiah – Surgeon-scientist at UHN's Krembil Brain Institute and Assistant Professor at the University of Toronto. Dr. Suppiah also leads the nerve surgery program at the Elisabeth Raab Neurofibromatosis Clinic, Canada's only adult NF clinic, based at UHN.Dr. Ryan Thomas – Family physician and Clinical Associate who works with patients at the Elisabeth Raab Neurofibromatosis Clinic. Dr. Thomas lives with neurofibromatosis himself.Additional resources: Canadian first: UHN Opens Multidisciplinary Clinic on Genetic DisorderElisabeth Raab Accelerator of Science to End NeurofibromatosisNeurofibromatosis Ontario Dr. Gelareh Zadeh's lab – link to more info about the Elisabeth Raab Neurofibromatosis ClinicChildren's Tumour FoundationThe Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembilTo get in touch, email us at krembil@uhn.ca or message us on social media:Instagram - @krembilresearchTwitter - @KBI_UHNFacebook - https://www.facebook.com/KrembilBrainInstituteThanks for listening!

As we gather around the mic today, our hearts go out to those affected by the recent tornadoes in the U.S. It's a solemn reminder of the resilience and unity within the towing and recovery community. In this heartfelt discussion, we dive into the transformative growth of Tow Professional Magazine, celebrating its successful shift to a digital landscape. The industry is abuzz with Dynamic Manufacturing's new chapter under EasyPak Continental Mixers, OneSource Parts, and CSTH LLC, and we unpack the potential it brings. With Anthony Gentile's wisdom and Matt Walter's fresh outlook, we explore the exciting road ahead for our industry.Our conversation takes a turn to the profound impact of human connection, as we spotlight Warrior Winch's incredible success at a recent trade show and their support of the International Towing Museum Survivor Fund. We share the moving story behind Recovery Billing Unlimited's "Lights On for Landon" campaign, and how it's lighting up the life of a young boy battling Neurofibromatosis. Milton Industries' acquisition of Stek Manufacturing isn't just a business move—it represents a steadfast commitment to quality and equipping tow operators with innovative tools, reinforcing the hands-on spirit that defines our community.We wrap up with vivid tales from the Florida Tow Show, where global connections were forged, and cutting-edge products were revealed. From Jordan's new MPL-60 wrecker to Towmate's safety lighting innovations, we reflect on the game-changing technologies that are shaping our industry's future. To the valiant first responders who grace our communities with their courage, we extend a prayer of protection and our deepest gratitude. It's been an honor to share these stories and moments with you, our valued listeners, and we look forward to many more.

Este programa busca facilitar la difusión de la información científica pertinente al área de Neurogenética tanto la aplicable a la vida cotidiana así como aquella del ámbito médico.

The Government need to step in and support those with rare diseases, that's according to The Get Rare Aware Campaign. For more on this Pat was joined on the show by Gillian Dunne who has Neurofibromatosis, a rare genetic disorder and Vicky McGrath CEO of Rare Diseases Ireland.

Hi Guys, welcome back to TV Reload. Thank you for clicking or downloading on today's episode with Peter Daicos. Our 5th eliminated celebrity from I'm A Celebrity Get Me Out of Here for 2024. I wanted to quickly apologise for not releasing the chats with Frankie and Michelle - it was decision from the team to not publish on those days due to Westfield attacks. I am sure I will have Michelle on the podcast at some other point and we will of course here a lot about Frankie and his time in the jungle in upcoming episodes AFL Legend Peter Daicos bonded with the other celebrities, Peter won the hearts of everyone watching as he spoke humbly about his career, his legacy and watching his sons create their own paths. From being dropped off the side of a mountain on his very first day, Peter also took part in the first eating trial of the season. He and Ellie also faced the Shafted trial wHere he took electric shocks like the champion he is. Peter's time in the jungle was in support of Flicker of Hope, a charity that raises awareness of Neurofibromatosis that directly funds research into the genetic disorder that affects one in 2,500 people. Peter will reveals how the experience has changed him for life and what his family thought of him going on reality TV. We will unpack the age differences amongst the celebrities and if he thinks the elimination results are a sign that younger audiences are voting? You will get some interesting insights into what Peter's relationship was like with Hollywood star Frankie Muniz and what their friendship looks like moving forward. I am also going to talk about how footy has changed over the 20 years since he retired and what are those changes he likes. There is so much to unpack with Peter. So sit back and relax as we unpack her time in the South African jungle. See omnystudio.com/listener for privacy information.

This week on the Life Science Success Podcast, my guest is Dr. Tiago Reis Marques Dr. Marques is a psychiatrist and currently the Chief Executive Officer of Pas i thea Therapeutics. Pasithea is developing new molecular entities for the treatment of CNS disorders, including Amyotrophic Lateral Sclerosis (ALS) and Multiple Sclerosis, Neurofibromatosis type 1 and Noonan syndrome.   On this episode of Life Science Success, Don Davis interviews Dr. Tiago Reis Marques, the CEO of PACEA Therapeutics. They discuss Dr. Marques's journey in psychiatry, the company's focus on CNS disorders, their pipeline of drugs targeting neurological conditions like schizophrenia and ALS, and the impact of their research on rare disorders like neurofibromatosis type one. The conversation also touches on leadership advice, inspiration, concerns about global issues, and what excites them. Dr. Tiago Reis Marques, a psychiatrist, is the CEO of Pasithea Therapeutics, a company focused on central nervous system (CNS) disorders. His background in medical research and his transition from academia to biotech were driven by a desire to apply his knowledge to develop treatments that benefit patients. Pasithea Therapeutics, co-founded with Professor Steinman from Stanford, aims to create innovative therapies for unmet needs in CNS disorders. The company's approach balances new drugs targeting novel mechanisms of action with known drugs repurposed for new applications. One of the company's focuses is on neurofibromatosis type one, a disorder affecting around 100,000 patients in the US, highlighting the company's commitment to tackling rare and challenging diseases with significant unmet needs. Marques emphasizes the importance of precision psychiatry and targeting specific subtypes of disorders, drawing parallels to how cancer treatments have evolved to focus on specific biomarkers and subtypes, reflecting a broader trend towards personalized medicine. His experiences and work in brain imaging, specifically with positron emission tomography (PET) and psychopharmacology, underscore his multidisciplinary approach to understanding and treating CNS disorders, leveraging his academic background to inform his leadership and strategic direction at Pasithea Therapeutics.

In this week's episode, Brain & Life Podcast co-host Dr. Katy Peters discusses the Gilbert Family Foundation's work on neurofibromatosis (NF) with their executive director, Laura Grannemann. She shares about ways they connect with the NF community, ongoing research the foundation is leading, and how anyone can get involved in advocacy work. Dr. Peters then speaks with neurologist and Director of The Johns Hopkins Comprehensive Neurofibromatosis Center, Dr. Jaishri Blakeley, about what exactly neurofibromatosis is, how it affects patients, and treatment options for all ages.   Additional Resources The Gilbert Family Foundation What is Neurofibromatosis? New Research Offers More Options to People with Neurofibromatosis Type 1   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Laura Grannemann @gilbertfamilyfoundation; Dr. Jaishri Blakeley @hopkinsmedicine Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Neurofibromatosis⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠from the Pediatrics section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Orthobullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on Social Media: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message

Priscilla Tollin was born with neurofibromatosis (NF), a neurological disorder that causes tumors to form on nerve tissue and can impact mobility. Priscilla's physical limitations meant that any hyperactivity she experienced growing up was turned inwards, and her ADHD flew under the radar until finally getting a diagnosis at 32.    Once Priscilla understood her ADHD brain, so many pieces of the puzzle fell into place. She was able to address her RSD, to shift her mindset to one of optimism and positivity, and to pursue a career she's genuinely passionate about. Now, Priscilla is studying pet nutrition and working on starting her own dog treat business. She is also an advocate for neurofibromatosis, disability, and ADHD.    During our conversation Priscilla shares her unique experience of having ADHD with no physical outlet, what NF is and the range of ways it can manifest, how self-acceptance led her to create the life she had always imagined, and her helpful advice for ensuring our pets are getting the nutrition they deserve.  Resources: spyhappy.me/bookreview Dog Treat Instagram: @ro_dogtreats Personal Instagram: @potatoesocks_  

Paloma Hoyos, una niña de 4 años que nació con neurofibromatosis tipo 1 y su familia, han pasado por toda una odisea para que la EPS Famisanar y el dispensador de Audifarma le entregue el medicamento llamado Koselugo que necesita para poder llevar una vida digna y normal.La neurofibromatosis es una enfermedad huérfana que provoca la formación de tumores, principalmente en el cerebro, los nervios y la médula espinal. Los estudios que le han hecho a la pequeña revelaron que están ubicados en estas zonas y son innumerables y algunos de ellos, inoperables.Ante los micrófonos de la W Radio, estuvo David Hoyos Zuluaga, padre de Paloma y quien señala que, aunque han cumplido con cada requerimiento, el proceso es lento y no garantiza la entrega de medicamento a tiempo.

This episode covers neurofibromatosis.Written notes can be found at https://zerotofinals.com/medicine/neurology/neurofibromatosis/ or in the neurology section of the 2nd edition of the Zero to Finals medicine book.The audio in the episode was expertly edited by Harry Watchman.

Listen as Dr. London Smith (.com) and his producer Cameron discuss Neurofibromatosis Type 2 with special guest Ray Ray (Roe Moore).  Sponsored by Caldera + Lab (use code "jockdoc" to get 20% off!). Not so boring! https://calderalab.com/pages/podcast-special-offer?show=Jock+Doc&utm_medium=podcast&utm_source=JocDoc https://www.patreon.com/join/jockdocpodcast Hosts: London Smith, Cameron Clark. Guest: Roe Moore. Produced by: Dylan Walker Created by: London Smith

Listen as Dr. London Smith (.com) and his producer Cameron discuss Neurofibromatosis Type 1 (von Recklinghausen's Disease) with special guest Diana Tang (Elyse Iovino).  Sponsored by Caldera + Lab (use code "jockdoc" to get 20% off!). Not so boring! https://calderalab.com/pages/podcast-special-offer?show=Jock+Doc&utm_medium=podcast&utm_source=JocDoc https://www.patreon.com/join/jockdocpodcast Hosts: London Smith, Cameron Clark. Guest: Elyse Iovino. Produced by: Dylan Walker Created by: London Smith

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, Soundtrack of Silence: Love, Loss, and a Playlist for Life.  EPISODE HIGHLIGHTS Can you talk about the inspiration for your book? NF2 causes tumors to grow on nerves and I have benign tumors on my hearing nerves. So while my ears work, the nerve that connects my hearing and my brain has been damaged and I'm deaf as a result. I felt a responsibility to put into words what I've been through because I once felt like I didn't have anyone to turn to.  Can you tell us about the soundtrack and collecting the songs on the playlist? When I came face-to-face with losing my hearing, I knew I wanted to hold on to music and the memories associated with specific songs. The soundtrack is a collection of songs associated with my experiences with rare disease. I started listening to songs with intention and considered the songs I wanted stuck in my head for the rest of my life, the ones I wanted to reflect back on in sorrow and joy.  Can you talk about your mindset to thrive? I spent a lot of time when I was younger, pretending my NF2 challenges didn't exist, hiding symptoms from others, putting so much energy into trying to exist as a person in spite of my disease. I realized later that through my challenges, I had learned to be a better listener because of my hearing loss. I became more empathetic because I have experienced in my own life that it doesn't matter how hard you try, some things are out of reach. I wouldn't have developed these skills without having NF2 and I'm proud of how it has shaped me and what I've learned from it.  What is your advice for others who want to tell their story? Having spent a lot of time advocating for myself and others, I notice this belief that someone has to be a polished speaker to tell their story. When it comes to sharing your story about rare disease, the more real and authentic, the more impactful. Your story is absolutely worth telling. And sometimes if you don't feel capable, just existing is enough.  LINKS AND RESOURCES MENTIONED Soundtrack of Silence: Love, Loss, and a Playlist for Life https://bookshop.org/p/books/soundtrack-of-silence-matt-hay/19995432?ean=9781250280220 Soundtrack of Silence on Spotify https://open.spotify.com/playlist/1GCTtdXb5zzJO0OMMZbcfv?si=0a9c377b237d4675 ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research ONCE UPON A GENE - EPISODE 215 - Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford https://effieparks.com/podcast/episode-215-beyond-the-crossroads ONCE UPON A GENE - EPISODE 209 - A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies https://effieparks.com/podcast/episode-209-a-leap-of-faith Matt Hay on Instagram https://www.instagram.com/hearmatthay/ CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Our friend, business leader, brand strategist, and trusted advisor Kate Doerge, faced the unimaginable, her daughter Penny passed away. Penny had been diagnosed with Neurofibromatosis when she was 4 months old -- and she lived with it, as well as irrepressible joy, for her 16 years on this Earth.And so, rather than isolate and pull back from the world in their grief over this past year, Kate and their family have chosen to celebrate Penny's life and energy by raising awareness of Neurofibromatosis (NF for short), redefining what grief looks like and spreading Penny's legacy of love and light.We are in awe of Kate's strength, resilience and positivity in this lifetime. We know that her journey can help all of us handle whatever life throws at us with more love, grace and fortitude.We will all face loss in our lives, Kate will give you a completely new perspective and approach to handle what may be the most difficult time in your life. You don't want to miss this conversation.WHAT YOU CAN DOVisit pennysflight.org to support NF and spread Penny's wings.Follow @pennysflight on Instagram.Visit theseekingcenter.com for more from Robyn + Karen, plus mega inspo -- and the best wellness + spiritual practitioners, products and experiences on the planet! You can also follow Seeking Center on Instagram @theseekingcenter

In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ThoNeurofibromatosis Type 1 (Von Recklinghausen Disease) from the Oncology section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets Linkedin: https://www.linkedin.com/company/medbullets

In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Neurofibromatosis Type 2⁠ from the Oncology section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets Linkedin: https://www.linkedin.com/company/medbullets

Amit Ghose was born with Neurofibromatosis type 1 which is a condition that causes tumours to grown along nerves. Amit has always tried to embrace his disfigurement and throughout this podcast we discuss: - Growing up with NF1 - Building confidence & managing criticism - Difficulties with AI & the workplace - Finding Love KEEP IN TOUCH:

Join us on a remarkable journey as we delve into the inspiring life of Amit Ghose, a courageous individual who has faced the challenges of living with neurofibromatosis type 1 (NF1) head-on. In this podcast, Amit shares his experiences, from growing up with this rare condition that only affects 1 in 3000 people, to the hurdles he encountered during his school years, including the painful struggle of not being accepted and the heart-wrenching experiences of bullying. Discover how cricket became his refuge, transforming his life and instilling in him the resilience to face adversity. At just 11 years old, Amit faced a life-altering moment when a tumour led to the removal of his eye. We explore the profound impact this had on his life, the challenges he encountered, and the incredible strength it took to navigate this new reality. But Amit's story takes a heartwarming turn when he opens up about finding love. His journey of acceptance and self-love is nothing short of remarkable and a testament to the power of his human spirit. Today, Amit dedicates his life to spreading awareness about NF1, using his voice to make a difference in others facing similar challenges. Through his story, we learn about the importance of acceptance, building confidence, and the transformative power of love. Join us in this extraordinary conversation as Amit shares his experiences, triumphs, and mission to create a world where awareness and understanding of NF1 shine brightly. What is neurofibromatosis type 1

After decades in marketing and communications and a new role as an operating partner at Traub, Kate Doerge never anticipated that she would also become a CEO. This new job, however, is the one her whole career has prepared her for and the one she was meant to do.  When Kate's daughter Penny rolled off the bed at four months old, what seemed like a typical tibia fracture uncovered a diagnosis called Neurofibromatosis, also known as NF. One out of 300,000 kids is diagnosed with NF. This genetic disorder causes tumors to grow on nerve pathways anywhere in the body. At the time, doctors encouraged them to focus on healing the leg and not google NF.  As parents, they were determined to make sure Penny lived a big, beautiful life. Even though she had her first surgery at 15 months old and was in a body cast for four months, she would commando crawl across the room in her bright pink cast bedazzled with gemstones. Nothing stopped Penny. Throughout her life, Penny was never defined by her ailments. She also didn't hide from them. She knew she was different from most people but never referred to it. Over her short years, Penny endured seven orthopedic surgeries and 11 brain surgeries. She never felt sorry for herself. Penny lived as a typical social and funny teenage girl with a beautiful smile and someone who was always the life of the party. Sadly, NF took Penny at 16.  Within days of Penny's passing, Penny's Flight was launched in celebration of the extraordinary life of Penny Doerge and the qualities she personified — joy, artistic expression, and humor — while bravely living with Neurofibromatosis (NF) since infancy. The Foundation's mission is to make much-needed advances in medical research on Neurofibromatosis and related disorders — with a lasting impact on altering the course of this disease. There is no cure for NF, and research around the disease remains underfunded despite being one of the most common genetic disorders in the United States.  Through Penny's story and bright light, the Foundation aims to expand knowledge around NF while inspiring others to find beauty in imperfection, positivity in the face of challenge, and faith over fear. In less than a year, they have raised over $3 million for Penny's Flight, and this is just the beginning.  There is no greater tragedy than losing a child. Still, Kate Doerge and her husband, Chad Doerge, made a choice: to choose joy and positivity and focus on spreading their daughter Penny's light because living life with joy and optimism came naturally for Penny. In this episode, Kate shares how she and Chad handle adversity and how their mentality of choosing joy and positivity has led them. Kate shares the steps they took to build this Foundation in a few days and how anyone can model this mindset to push through even the most tragic times. As Kate says, it's not about your lifespan but your wingspan. Penny always spread her wings and shined her light. This episode is about strength, resilience, and the power of positivity, everything Penny embodied. Penny lived her life's purpose and will continue to inspire others. 

Dr. David Gutmann is the Donald O. Schnuck Family Professor of Neurology and Director of the Neurofibromatosis Center at Washington University School of Medicine. Dr. Gutmann's expertise lies in the study of neurofibromatosis, or NF, a genetic disorder which causes tumor growth in the nervous system throughout the body. His work has received international recognition, resulting in him being honored with the 2012 Children's Tumor Foundation Frederich von Recklinghausen award and Election as a Fellow of the American Association for the Advancement of Science. He was also awarded an Alexander von Humboldt Award and an Einstein Fellowship from the Berlin Institute of Health to allow for the creation of an international research team. He is also recognized for pioneering preclinical models of brain tumors in mice. Dr. Gutmann is truly a world-class scientist and clinician and I was very happy to talk to him, so I hope you enjoy this episode.

After being diagnosed with Neurofibromatosis 1 which can cause tumors to form, Addie Gould was diagnosed with an Optic Pathway Glioma, which is a form of Pediatric Brain Cancer. This caused great damage to Addie's eyesight in her left eye. On today's podcast  Addie's mother Jillian will talk about Addie's treatment ordeal which included a 60 week Chemotherapy cycle. Jillian will also discuss this week's Pan Mass Challenge Bicycle event, in which Addie will be the Pedal Partner for Team Kermit, under the captaincy of Steven Branfman, who lost his son Jared to cancer in 2005. 

The Revs lost their first MLS game in almost two months in a controversial 2-1 loss to Inter Miami. The game was overshadowed by some questionable refereeing while the Revolution saw some disappointing striker play throughout the match. This week, Caleb Pongratz of Prost Soccer and Greg Johnstone discuss the refereeing, Giocomo Vrioni's one touch, and answer listener questions! You can support our podcast by rating and reviewing us on iTunes, Spotify or wherever you are listening. Also, please follow us on social media: Twitter: @CalebPongratz10, @SeanLDonahue, @RevolutionRecap Instagram: www.instagram.com/revolutionrecap/ Facebook: www.facebook.com/revolutionrecap   Thank you to Golaco Kits for sponsoring this episode.  You can visit https://www.golacokits.com and use promo code REVSRECAP at checkout to receive 15% off your order. Twitter: @GolacoKits Instagram: https://www.instagram.com/golacokits/   Revolution Recap thanks Sobczak.Law for their support of local independent media and their mission of bringing unbiased truth.     Please check out our friends at The Rebellion on twitter at @NERebellion and check out their website at nerebllion.org.  And be sure to visit The Blazing Musket at www.theblazingmusket.com and visit them on social @BlazingMusket on twitter. It is also NF Awareness month. Learn more about Neurofibromatosis by visiting the Children's Tumor Foundation at www.ctf.org. 

May is NF (Neurofibromatosis) Awareness Month! In this episode, we chat with Kevin MacDonald, a man who has faced more medical challenges than the entire cast of Grey's Anatomy combined. He's got esophageal atresia, a hole in the heart, and NF2 — and no, that's not a fancy new Netflix series. We're talking about Neurofibromatosis type 2, which causes brain and spinal tumours, deafness, paralysis, and loss of vision. But don't worry folks! Kevin's not here to bring us down — he's got a great sense of humour. He'll share stories about pretending to understand what people are saying when they yell at him (because apparently, that's the solution to hearing loss?), talking to mannequins at clothing stores, and accidentally putting his foot in his mouth — though to be fair, that's probably the only body part that isn't causing him any trouble. And if that's not enough, he'll even show us his impressive new talent: controlling the left side of his face with his tongue. Get your head out of the gutter. Tune in for some laughs and inspiration as Kevin shows us that even in the toughest of times, humour can be a powerful tool for healing and resilience. Join the post-episode conversation over on Discord! https://discord.gg/expeUDN

On this episode of @champandthetramp, the fellas stopped by Beacon 70 in Brick, NJ for another on-location episode for UFC 284. Guests include @danterivera_bjj, @jesseholt7, Frankie's son Santino and our special friend, Jaxon and his family. Jaxon is fighting Neurofibromatosis and collects Police patches from all over the country for a "Hero" cape and blanket he brings to all hospital visits! It was a pleasure having Jaxon and his family on the podcast! #champandthetramp Show page: https://linktr.ee/champandthetramp https://www.instagram.com/champandthetramp Frankie: https://www.instagram.com/frankieedgar Roger: https://www.instagram.com/rogermathewsnj #patchesforjax #endnf #ufcpodcast #mmapodcast #frankieedgar #rogermathews #ufc #mma #jerseyshorefamilyvacation #jerseyshore #mtvjerseyshore #tomsriver

In this episode, we review the high-yield topic of Neurofibromatosis from the Pediatrics section. Follow Orthobullets on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://anchor.fm/orthobullets/message