Reference Guide to the CMTA Website

The CMTA website is loaded with information. Whether you're browsing all the information and resources available to you, or whether you're seeking the answer to a specific question, you could spend hours here and still not read or find everything.

Starting with the navigation buttons and links on the top of each page and then going down the buttons on the left, this guide will give you an overview of what's available and how to access it. You can browse all topics by scrolling down the page, or you can use the links below to go directly to a specific topic.

• About the CMTA: Our mission, vision, directors, and medical advisors
• Join the CMTA: About membership and its benefits
• How to Contribute: Support our work and help fund research
• Contact Us: Ask us a question by phone, mail, or email
• Search: Use the search box to find info on specific topics
• Member Log In: Usernames, passwords, and how to use them
• About CMT: Diagnosis, Symptoms, Causes, Treatment, Inheritance, etc.
• Ask the Experts: Read previously asked questions and answers, or ask a new question
• Medical Alert: A list of medications that may be harmful to someone with CMT
• Resources: Find physicians, support groups and other useful information
• Publications: The CMT Facts series, Physician's Handbook, and more
• Daily Living Aids: Useful products to make everyday tasks easier and safer
• Discussion Forums: Online message boards and Parent's and Kids networks
• Research: Read about research funded by the CMTA
• CMT Database: Submit your information for use by scientists and researchers
• Parents and Kids: Read how parents and kids cope with CMT and submit your story
• Archives: Online collections of newsletters and CMT headlines
• Events: Read about what's coming up and what's already happened
• Free Info Packet: Request free info from the CMTA
• Email List: Free updates from the CMTA
• About the Flash: "The Faces of CMT"

• Our Mission: Because we ask for both your trust and your money, we believe you should know what our mission is and what we're doing to attain our vision of a world without CMT.
• CMTA Board of Directors: We also believe you should have the opportunity to read the personal statements of our Board of Directors and see why they have both the professional competence to govern the organization and the personal commitment to find a cure.
• CMTA Medical Advisory Board: More than 50 noted physicians, scientists and researchers sit on the CMTA Medical Advisory Board. Not only are they the "experts" who answer patient questions and compile the Medical Alert list, but they also play a crucial role in guiding the CMTA's commitment to funding research.
• Our History: Twenty-five years ago, there was no CMTA. We've come a long way since 1983, when we began as the National Foundation for Peroneal Muscular Atrophy. We hope you will join us and help us write the concluding paragraphs as we complete the task of finding a cure for CMT.

You can click here to join now using our secure online form. If you do, you must enter a valid email address, username and password. When you submit the form, this will give you immediate access to the newsletter archives and other members-only areas of the website.

You must also indicate how you want to receive The CMTA Report. If you choose the "PDF via Email" option, we'll email you a link that will enable you to read the newsletter as soon as it's compiled. You'll actually get it before the printer, and you'll save us the cost of postage and printing. Or you can specify "Print" and we'll mail you a copy. If you choose "Print and PDF," you'll get both.

Or, if you prefer to join by mail, you may print this form and mail it to the CMTA.

If you join by mail (or if you're a current member), you'll have to follow a few simple steps to obtain access to the members-only areas. First, go to the forum and register a username, email address and password. Once you've done that, send an email to username@charcot-marie-tooth.org and tell us your username, your full name, and your city and state. When we verify your membership status and update your account, we'll send you a confirmation email, usually by the next business day.

Many of you support us generously through our annual and research appeals, and others make donations in honor or in memory of family members and friends. You can do this easily by using our secure online donation form.

If you use the online form, you can specify whether your donation is to be used for operations or for research. (As of September 28, 2005, the CMTA stopped deducting administrative costs from donations to research, so 100 percent of every dollar you donate to research will be deposited directly in the CMTA Research Fund and will be used solely to fund grants for research approved by the CMTA Medical Advisory Board.)

In addition to donations by check or credit card, there are other ways you can contribute to the CMTA:

• Start a "Circle of Friends." We'll provide all the help you need to create a personal letter you can send to your family and friends asking them to support the CMTA. Click here to learn how you can get started!
• Many people contribute through the United Way, the Combined Federal Campaign, or other programs where they work. Some companies, for example, have matching gift programs that match your donations dollar for dollar.
• We are an affiliate of iGive, so if you make purchases online, you can support us by registering with iGive.com and identifying the CMTA as your cause. Depending on the merchant, a percentage of each purchase is automatically donated to the CMTA.
• Finally, we encourage you to consider other ways to support the CMTA, such as donations of stock or testamentary bequests.

Click here for more information.

If you have a general question or would like more information, you can email us at info@charcot-marie-tooth.org. In the U.S., you can also call us toll-free at 1-800-606-2682.

Otherwise, you can use the information below to contact us by mail, phone or fax:

The Charcot-Marie-Tooth Association
2700 Chestnut Street
Chester, PA 19013-4867
Phone: 1-610-499-9264
Fax: 610-499-9267

First, go to the forum and register a username, email address and password. Once you've done that, send an email to username@charcot-marie-tooth.org and tell us your username, your full name, and your city and state. When we verify your membership status and update your account, we'll send you a confirmation email, usually by the next business day.

Once you have your username and password, logging in is easy. The member log-in system is integrated with the forum log-in system, so you can use either the Member Log In/Log Out link that appears in the upper-right corner of each page, or you can go to the General Forums page and Log In. You can also check the box to be automatically logged in each time you visit the site.

• Overview
• Characteristics and Symptoms
• Diagnosis
• Types and Causes
• Genetics and Inheritance
• Treatment and Management
• More About HNPP
• CMT and Pain

We've grouped previously asked questions by topic. Once you select a topic, clicking on a question brings you right to the answer, or you can scroll down the entire page and read all the questions and answers under that topic. (You can also find specific questions using the site search box.)

• Drugs/Medication
• Pain
• Surgery/Fractures/Falls
• Bracing/Footwear
• Disability/Insurance/Legal
• Diagnosis/Genetics/Inheritance
• Pregnancy
• Children/School
• Exercise/Physical Therapy/Other Therapies
• Breathing Problems/Fatigue
• Miscellaneous

If you have a specific question you'd like to ask a member of our Medical Advisory Board, email it to us at asktheexpert@charcot-marie-tooth.org. We'll forward it to the appropriate doctor and send the reply directly to you.

This page displays our standard Medical Alert list. The drugs are grouped according to their degree of risk. Some are known to be neurotoxic, and others are potentially harmful to people with CMT. (Members who are logged in can also view an expanded version of the list.)

• CMTA Physicians List for Selected State
• Support Groups Meeting in Selected State
• Accessibility, Mobility, Travel
• Daily Living Aids
• Advocacy/Legal
• CMT Genetic Information
• CMT Medical Information, Diagnosis, and Treatment
• CMT/Neuropathy Organizations and Discussion Forums
• Federal Government (SSA, Medicare, DOL, DOJ, EEOC, ADA, etc.)
• General Information about Disability Organizations and Resources
• General Medical Information and Resource Locators
• Health and Disability Insurance
• Medicare and Social Security
• Neuropathic and Chronic Pain Organizations
• Resources for Parents
• Physician and Health Professional Finders
• Scooters, Powerchairs and Wheelchairs
• Vehicle Modification Programs and Driver Rehab
• Vocational Rehabilitation/Independent Living

Click on any of the links above, enter your state, and go directly to the listings for that topic, but before you do, please take a moment to consider how you can make a valuable contribution to the CMTA and to everyone who uses these resources.

This information is constantly changing, especially the physician lists, and there are also areas for which we have very little information. If you know physicians who are knowledgeable about CMT but who are not on the list, if you have a resource that isn't on the lists, or if any of the other information is incorrect, please email us at webmaster@charcot-marie-tooth.org.

Click here to view the contents and prices of these publications. (If you are a member and order online, please remember that you must be logged in to receive the discounted price for members. Or, if you prefer, you may click here to download and print a form you can mail in to order these publications.

Click here to view these items.

You can read and post messages anonymously as a "guest," or you can click here to register and create a username and password. (The forum log in is also integrated with the member log in, so if you join online, your username is automatically registered in the forums.) When you log in, your posts will display your username.

Members who are logged in are able to access two additional forums, one called CMTA ParentsNet and one called CMTA KidsNet. There hasn't been a lot of activity here yet, but our vision is that the ParentsNet will eventually become a cohesive group working together to prepare information for schools, raise funds, and organize events, and this forum will be a place to share information and ideas. If you're a parent, you're welcome to join us!

The KidsNet also has a special purpose. We've seen how important it is for people to share their experiences and feelings, and it's no less important for kids to be able to connect with other kids and talk about how CMT impacts their lives. We also want a safe and secure place for them to exchange messages, and requiring parents to be members creates an extra level of assurance. When your child registers, contact us and we'll set up a unique username and password for him or her.

The CMTA is committed to funding research and finding a cure, and you can click here to follow our funding history year by year. You'll see we started small, awarding fellowhip grants of $35,000 each. In 2005, we increased the number and size of research grants, awarding grants of up to $100,000 a year for three years. Some of these commitments are ongoing, as is our commitment to fund $550,000 of the Ascorbic Acid Clinical Trial, which we are co-funding with the MDA.

We've now funded over $2 million in research, and most recently, we launched STAR, the Strategy to Accelerate Research. STAR is an agressive and focused plan to develop effective treatments for the three most common forms of CMT within three to five years. It's doable but it's costly. To fund STAR, the CMTA needs to raise $10 million over the next three to five years.

We're developing additional sources of funding to help meet these obligations, but your contributions continue to be vital to our success. If you share our commitment to finding a cure, please click here to make a donation.

Click here to read about the database.

Click here to go to the Parents' page, or click here for the Kids' page.

The archives, which are only accessible if you are a member and logged in, contain PDF files of our newsletters from the first issue of The NFPMA Report, which came out in 1987—it wouldn't become The CMTA Report until 1990—to the present.

There are two ways to view the archives. If you want to locate a specific issue and you know the year it was published, select that year and click "Go." All issues from that year and their tables of contents will be displayed. When you find the issue you want, just click on the link to download the PDF. Or, if you're trying to locate articles on a specific topic, you can enter a keyword in the search box and all related articles in the tables of contents will be displayed.

Click here to view archived issues of The CMTA Report.

Members can also access archives of "CMTA Headlines" and "CMT Newsmakers" articles from the homepage, and the archives of email updates are accessible to everyone.

Click here to request a packet.