Awareness

We believe that one of the biggest challenges to living with Charcot-Marie-Tooth is the lack of awareness by the general public and the medical community.  HNF is dedicated to changing this.  Through several important initiatives, HNF provides crucial information and knowledge about CMT to a vast audience.

The National CMT Resource Center

Funded through a cooperative agreement from the Centers for Disease Control and Prevention, HNF launched the National CMT Resource Center in 2011 to provide information, resources and training to those living with CMT, their caregivers, and professionals in the medical and school communities.

School Outreach Program

HNF launched its CMT and Disability School Outreach Program in 2011, using the children’s book, Arlene On the Scene, as a launching pad to foster a greater understanding of difference, disability and CMT.  Free school presentations are provided nationwide.

Professional Training and Outreach

HNF offers training and information for health care professionals and others regarding CMT.  The National CMT Resource Center provides a wide range of information directed at providers, including a CME course on CMT.  HNF also sponsors events and conferences within the medical community in order to increase awareness and disseminate information about CMT.

3 Responses to Awareness

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  • EMILIE MCNICOL says:

    i don’t want all these cheerful fun runs, etc. i’m too sick to participate and live in tasmania, australia.
    so give me more information — like about cmt2c which can affect the vocal cords and paralyze them. i can no longer sing and have had no voice for weeks. am cranky and depressed and frustrated at lack of easily available genetic testing for other variations of cmt in australia. still waiting, after 8 weeks, for genetic test results for cmt1a.
    i am old, live alone, widowed and just need to know more exactly what i’ve got and what i can expect in the future.
    regards
    emilie mcnicol

    oh help, emilie mcnicol 03 6435 4457 – emiliemcnicol@yahoo.com sulphur crk tasmanai,.

    • carol says:

      Thank you for your comment! That’s a great point and we certainly understand your position. While we need to fundraise in order to survive as an organization, we can’t do it in place of service to our constituents, and there is a great need for more information about CMT, its various manifestations, current research, and available supports. We are in the midst of developing these kinds of resources within our National CMT Resource Center, http://www.help4cmt.com. It is a work in progress, with many substantive articles already up but many more to come, along with available experts who can help respond to the needs of those with CMT, their families and caregivers. Please submit your email to us at help4cmt.com so we can let you know when we begin to post these new sections of our website which will focus in on many of the relevant areas affecting people with CMT, including podiatry, genetics, orthopaedics, surgery, etc. And keep those comments coming. We will only get better with involvement from the community.

      • ross says:

        My Brother has been diognosed with CMT, my nephew has sysmtoms, my Dad has sysmtoms and i’ve got a hell of a sore foot with many of the known sysmtoms too, what pain releif is there for this and what can be done to change the future of the problem.

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