Support Groups and Mailing Lists

We all need someone we can talk to, someone who can truly understand the struggles we're facing, someone who can do more than simply cry for us or with us.

We all need someone who can encourage us to be bolder and rejoice with us in our victories.

Within this forum of strangers we can discover friendships, support, hope.

Come To The Forum
by Rich Clingman (September 14, 2001)

"Come to the forum, it's a place to talk."
Timidly, I wait. I reach. I knock.

So laden by burdens my soul does groan,
Surrounded by others, yet so all alone.

The doctors and friends and family,
They're sorry, sympathetic, they cry for me.

Yet they haven't a clue about what I face,
So I turn to this forum, this stranger-filled place.

I find there are others who have walked before
As I stand trembling at the now-open door.

They speak of things I can't comprehend,
Since my only thoughts are of my boy's end.

They speak of joy, of life, of hope,
Of trials, yes, and ways to cope.

And though we may never meet face-to-face,
I find love in this forum, this friend-filled place.


This will never be an all-inclusive list of support groups and mailing lists; rather, it is intended to be a starting point to support groups and sites with helpful links. Please send your nominations for inclusion on this list to . [Searching Suggestions]

Subscribing To Mailing Lists

Mailing lists are denoted with an astrisk (*) to the left.

Unless otherwise noted, to subscribe to a mailing list send a blank message to the email address given. You will receive a confirmation request message. Hit 'reply' and 'send' to confirm your subscription request. You should then receive a message telling the group's mission and guidelines, and how to send messages to the list. You will begin receiving new messages submitted to the list.

Once subscribed, I suggest sending a short 'New Member' introduction message so everyone knows you've joined.

While most mailing lists are 'open' to anyone wishing to join, most are 'members only' which means that only subscribed members of the list can send messages to the group. This minimizes junk mail.


Duchenne Muscular Dystrophy (DMD) - News and research on DMD and Becker - Information on 40 forms of neuromuscular disease.


Vent Users

disABILITY Information and Resources

* Vent Users Mailing List Information (Archive)

The Vent Life - Several articles including RF interference caused by wheelchairs and conversion to NIV.


Spinal Muscular Atrophy (SMA) - Families of SMA. Information, research, Kid's Corner. Links to sites in French, Spanish, German, and Italian. - Many links, news, and information.


Post Polio Syndrome (PPS) - News, directory, links, more.


Amyotrophic Lateral Sclerosis (ALS)

ALS Association - News, research, guides, links.


Spinal Cord Injury (SCI)

University of Washington Rehab - Article on switching from tracheostomy to NIV


Equipment - Vent Manufacturer - Dr. Bach does not recommend CPAPs for people with restrictive lung disease; however, this website has information about various masks and accessories that can be used with Bi-PAP or volume vents. Click 'order' & scroll down. To see information about a product, click on the green camera to the right. There are also informative FAQs.


Searching Suggestions

In addition to trying your luck with and other search engines, you might try the following Internet directories and information sites...

Support Groups and Mailing Lists
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Dr. Bach's Articles: ©2000-2004, John R. Bach, MD, used by permission.
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