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Wading through the Social Security Disability Benefits process feels like navigating a bureaucratic labyrinth—one that becomes even more daunting when you're dealing with Charcot-Marie-Tooth disease. From chronic muscle weakness to mobility challenges, CMT sufferers face enough hurdles without fighting government red tape.

This episode cuts through the confusion, offering a specialized roadmap for CMT patients seeking disability benefits. We break down the two distinct pathways—SSDI (tied to your work history and FICA contributions) and SSI (needs-based with strict financial requirements)—and explain critical differences in waiting periods, payment amounts, and healthcare access. While SSDI requires five months before your first payment and a staggering two-year wait for Medicare, SSI offers immediate Medicaid eligibility despite its lower monthly payments and tight asset restrictions.

The heart of our discussion examines the five-step evaluation process used by Social Security, revealing why initial denial rates approach a shocking 90%. We walk through each step: the earnings threshold, severity requirements, medical listings, past work assessment, and the "mythical, hypothetical" test of whether any job exists nationwide that you could theoretically perform. For CMT specifically, we examine how the condition gets evaluated under peripheral neuropathy listings and why most cases win or lose at steps four and five.

Most crucially, we share the documentation strategies that transform denial into approval. Beyond diagnosis, you need objective medical evidence translating symptoms into functional limitations—EMG studies, gait analysis, and the all-important Residual Functional Capacity form that connects your medical reality to work capabilities. We explore how age transforms approval chances through the "grid rules," why consistent medical records matter, and how attorneys working on contingency can dramatically improve your odds at the critical hearing stage.

Ready to tackle the system? Listen now, take notes, and prepare to advocate effectively for the benefits you deserve.

Learn more at: https://www.hnf-cure.org/cmt/patient-resources/legal-rights-and-benefits/

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Have you ever wondered how to navigate the complex intersection of your Charcot-Marie-Tooth disease and your professional life? This essential episode delivers a powerful roadmap for workplace success, breaking down the often intimidating process of requesting accommodations into clear, actionable steps.

We demystify the concept of "reasonable accommodation" under the Americans with Disabilities Act, explaining not just what it means legally, but how to translate this knowledge into practical solutions that work for you. From understanding the high bar employers must meet to claim "undue hardship" to recognizing that you're entitled to effective solutions—not just any accommodation—we arm you with the knowledge to advocate confidently.

The episode walks through specific accommodation examples for common CMT challenges: mobility aids without question, flexible scheduling for fatigue management, ergonomic equipment for hand weakness, and environmental modifications for comfort and safety. More importantly, we outline the six-step process for requesting accommodations successfully, emphasizing the critical importance of documentation and follow-through.

Perhaps most powerful is the mindset shift we encourage: these accommodations aren't special treatment or favors—they're tools that enable you to perform your job effectively and safely. By understanding your rights and approaching the process strategically, you transform from someone asking for help to an empowered professional creating sustainable working conditions.

Ready to take control of your work environment? Listen now, then visit resources like the Job Accommodation Network (askjan.org) or connect with the Hereditary Neuropathy Foundation (hnf-cure.org) to put these strategies into action in your professional life.

Learn more about CMT & Inclusive Employment here: https://www.hnf-cure.org/cmt/patient-resources/inclusive-employment/

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Facing a Charcot-Marie-Tooth diagnosis can feel like being dropped into unknown territory with a flood of questions and uncertainty. Where do you even begin? What steps are truly essential? How do you move from feeling overwhelmed to taking meaningful action? 

This episode cuts through the noise to deliver a comprehensive roadmap for newly diagnosed individuals and their families. We break down the critical first steps recommended by the Hereditary Neuropathy Foundation, starting with genetic testing to confirm your specific CMT subtype—a crucial detail that affects everything from prognosis to treatment options. We discuss the non-negotiable knowledge of neurotoxic medications that could potentially worsen symptoms, including common antibiotics, vitamin supplements, and cholesterol medications that require vigilant awareness.

Beyond medical considerations, we explore the power of self-assessment to identify your unique challenges and priorities, whether they involve physical symptoms, lifestyle adjustments, or emotional wellbeing. We highlight specific HNF resources like the CMT Self-Care journal, adaptive exercise programs, and their national network of Centers of Excellence that provide specialized care. The episode also unpacks the vital importance of community connection through support groups, webinars, and online forums that combat isolation and provide shared understanding.

For those looking ahead, we explore how individuals can contribute to the future of CMT research through registries, biobanks, and various support initiatives. Throughout, our message remains clear: while a CMT diagnosis presents challenges, you're not starting from scratch—there's an established roadmap, supportive community, and wealth of resources designed to help you navigate this journey with confidence. What single empowering step will you take today to move forward?

Learn more here: https://www.hnf-cure.org/cmt/patient-resources/newly-diagnosed/

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Have you ever wondered what's actually involved in correcting CMT-related foot deformities? This episode cuts through medical jargon to deliver a comprehensive guide to foot surgery for people with Charcot-Marie-Tooth disease, combining expert clinical knowledge with invaluable first-person experience.

The classic high-arched, inward-turning foot seen in CMT isn't just a cosmetic issue—it creates real functional problems that impact daily living. Walking on the outside edge of your foot causes pain, balance problems, and can trigger issues up the entire kinetic chain, affecting knees, hips, and back. Understanding this mechanical issue helps explain why surgical intervention might be worth considering.

We break down exactly what happens during surgery: the bone realignment that creates a stable foundation, the intricate tendon transfers that rebalance muscle forces, and what makes someone a good candidate. You'll learn why finding a surgeon with deep CMT experience is crucial, with Dr. Glenn Pfeffer's insights providing the clinical framework. Most powerfully, we share a detailed patient journey from Liz, who documented everything from pre-surgery preparation to the five-month recovery process, including incredibly practical tips about travel arrangements, accommodation considerations, and managing daily life during recovery.

What makes this episode uniquely valuable is how it bridges the gap between clinical explanations and lived reality. Yes, recovery is challenging—requiring total non-weight bearing for weeks and a dedicated support person—but understanding the potential for 20 years of improved function helps put that temporary challenge in perspective. Don't automatically assume your limitations are permanent. Listen now to determine if surgical correction might improve your quality of life, and share this episode with anyone navigating this complex decision.

For Liz's full Surgery Guide & PDF, click here!

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AFOs might just be three letters—but for those living with CMT, they can mean the difference between daily struggle and confident mobility.

In this episode, we explore how the right Ankle Foot Orthosis can reduce fatigue, improve stability, and even change the way you walk. From common gait compensations to what makes a good brace great, this conversation is packed with insights that could change your next step—literally.

We also highlight two must-have tools, co-written by HNF and CMT orthotist Mitch Warner, CPO of Ortho Rehab Designs:

 ✅ The ABCs of AFOs Guide
✅ AFO Evaluation Checklist

👣 Curious about how carbon fiber compares to a classic plastic brace?
🦿 Not sure what “triplanar correction” means—but think it might matter to you?
🎧 Tune in, take notes, and get ready to rethink what bracing can do.

📥 Download your free guides hereand take that first step toward better mobility.

Participate in Research Join GRIN Today!

Register for the 2025 CMT Summit in Nashville on 4/24-26

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Send us a text

This episode explores the rapid advancements in understanding and treating CMT SORD, highlighting community engagement and innovative research, particularly focusing on the potential of the drug Gavorstat. The scientific journey from gene discovery to clinical trial showcases the power of collaboration, emphasizing patient voices in shaping treatment success.

• Discussion on what CMT SORD is and its symptoms 
• Overview of the SORD gene’s role in the disease 
• Insights into the drug Gavorstat and its mechanism 
• Updates on clinical trial results for Gavorstat 
• The importance of community support and advocacy 
• The role of the Hereditary Neuropathy Foundation 
• Implications of CMT SORD advancements for other types 
• Shift towards patient-reported outcomes in research 
• Reflections on the future of CMT treatment strategies

Learn more about SORD and Inspire Clinical Trial

Participate in Research Join GRIN Today!

Register for the 2025 CMT Summit in Nashville on 4/24-26

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Discover the complexities of Charcot-Marie-Tooth disease (CMT) and transform your understanding of this multifaceted condition. Join us on CMT Simplified as we uncover insights from the Global Registry for Inherited Neuropathies (GRIN) about the physical symptoms like foot drop and balance issues, as well as the emotional and social challenges faced by those living with CMT. We'll explore the emotional hurdles such as depression and anxiety that many grapple with, along with the diverse mobility aids that empower individuals with CMT to maintain their independence.

We emphasize the importance of a holistic approach in managing CMT, addressing both physical and emotional needs. Hear about the exciting 2025 CMT Summit in Nashville, offering workshops on adaptive fashion, nutrition, and mental health, as well as a groundbreaking study using Biosensics wearables to improve mobility data collection. With resources like the Hereditary Neuropathy Foundation's symptom checklist, the discussion highlights the empowering role of community support in enhancing the lives of those affected by CMT. Join us for an episode filled with hope, solidarity, and practical strategies for navigating life with CMT.

Join GRIN Today!

Download the CMT Symptoms Checklist

Register for the 2025 CMT Summit in Nashville on 4/24-26

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This episode dives into HNF's ABCs of CMT Pain Management Guide sharing effective strategies for managing pain associated with Charcot-Marie-Tooth disease (CMT). By exploring topics from dietary changes to the latest research in pain relief, we empower listeners with resources and insights to improve their quality of life.

• Understanding neuropathic and musculoskeletal pain
• The role of diet in pain management
• Anti-inflammatory foods and dietary choices
• Exercise as a key component for pain relief
• Overview of topical treatments and prescription medications
• Supplements that can aid CMT pain management
• Importance of bracing and orthotics
• Exploring holistic and alternative therapies
• Mental health considerations in chronic pain management
• Information about the CMT Summit and available resources

Download, order, or view the full Pain Guide here!
Register for the 2025 CMT Summit in Nashville on 4/24-26
Access FREE CMT Exercise Classes on MovementIsMedicine.com

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

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Patients are driving the future of Charcot-Marie-Tooth (CMT) research, and you can be part of the change! In this episode of CMT Simplified, we dive into how wearable technology, like BioSensics devices, is empowering patients to participate in clinical trials from the comfort of their homes. Learn how your everyday experiences can provide researchers with the critical data needed to develop better treatments and improve the quality of life for the entire CMT community.

Your voice and participation matter—tune in to discover how you can shape the future of CMT care!

*HNF is now recruiting patients to participate in the Wearable Study in Nashville, TN at our annual Clinical Trial Readiness Summit on April 24-26th.

***Click here to sign up and be notified when registration opens!

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.