Page 18 - Branch Leader Guide

Charcot-Marie-Tooth
Association

Professional Resource List

Please collect the names of local professionals (PTs, OTs, neurologists, physiatrists,
orthotists, orthopedic surgeons, etc.) from your members regularly. Before submitting
your new resources to the CMTA, please call the CMT specialist in question to verify
that he/she sees people with CMT. We want to make sure that the CMTA Resource
Directory contains CMT-knowledgeable specialists. Please also ask whether they would
be willing to give out new patient packets of CMTA information and leave a few “What is
CMT” pamphlets in the waiting room.

Then, please send the CMT specialist’s name, medical degree, specialty (including
whether the practice is adult, pediatric or both) address, appointment phone number,
office email and website to your regional branch manager who will put it on the CMTA
website. We will keep a record of who submitted each listing so that if questions arise,
we will know who to contact.

This information can then be collected and compiled and sent to your regional branch
manager semi-annually (January and June), and he/she will upload it to the CMTA
website.

You may also consider creating a resource document for your specific branch with a list
of local CMT professionals and businesses. This is a great job for a group member to
take on. This resource document may contain:

• All local CMT-savvy medical professionals (podiatrists, physiatrists, neurologists,
orthotists, psychopharmacologists, nutritionists, occupational therapists, physical
therapists, etc.)
• Shoe stores
• Information and referral agencies’ crisis lines
• Low-cost mental health clinics
• Mechanics trained to retrofit vehicles, making them handicapped accessible
• National websites selling medical supplies and/or gadgets

For a great example, please refer to the Resource Guide for the Washington, DC area
(www.cmtausa.org/leader-toolbox). The template for the Resource Guide can also be
found in the Leader Toolbox.

Guidelines and Tips for Conducting Meetings

 Keep what is said in the meeting confidential.

 Listen empathetically when others speak. Thank the person for divulging
personal information and show support.

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