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  • The ABCs of AFOs: A Guide for CMT Patients
    2025/03/25

    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 here and 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.

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    15 分
  • CMT-SORD: From Discovery to Clinical Trials
    2025/02/21

    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

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

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    12 分
  • GRIN Stats: The Many Symptoms of CMT
    2025/02/03

    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

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

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    12 分
  • Managing Pain in CMT: Strategies and Solutions
    2025/01/08

    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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    16 分
  • Wearables and CMT: Data That Makes a Difference
    2024/11/19

    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 s
    ign 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.

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    12 分