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, itís 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,
Theyíre sorry, sympathetic, they cry for me.

Yet they havenít 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 canít comprehend,
Since my only thoughts are of my boyís 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.

Online Chat

Online chatting is live and interactive, using an IRC Chat Client. You can sit and read the discussions as they happen, and join in by typing your questions and comments. The DMDforum page has links for downloading several free IRC client programs.

MDA Chat Calendar - Chat sessions on various neuromuscular diseases, career paths, research and more. Spanish language sessions are also scheduled. Times given are US Eastern Time.

DMDsupport Forum Chat - Fridays 5:30pm - 8:30pm US Eastern Time

DMD Pioneers Chat - Wednesdays & Sundays
    (Adults with DMD and parents of older teens/adults.)

 

Duchenne Muscular Dystrophy (DMD)

www.DMDforum.org - Many links, newsletters, message boards, and more.

www.DMDoptions.com - Many news items. Updated regularly.

www.ParentProjectMD.org - News and research on DMD and Becker

www.MDA.org - Information on 40 forms of neuromuscular disease.

DMD Pioneers - Adults with DMD and parents of older teens/adults emphasizing Prolonged Survival

Fight For A Future - Dedicated to finding treatment while a cure is sought

George Smith's Resources - Many links to organizations and individual websites. Information in English, French, German, Dutch, Spanish, and other languages as he finds sites.

* dmdsupport-subscribe-request@tbinet.org - DMD Support Forum

* md-list-subscribe@YahooGroups.com - MD-List (All types of MD)

Girls with Duchenne

Yup. I said, "Girls." We're not just talking "manifesting carriers", but girls with Duchenne.

Girls with Duchenne - Personal stories and a support message board for this rare manifestation of Duchenne.

Maureen's Disability Links - A 40-something woman with Duchenne shares a little about herself plus many disability-related links.

But Girls Don't Get Duchenne... or do they? - MDA Quest article... When DMD 'carriers' have trouble of their own.

 

Vent Users

International Vent Users Network - Resource directory, news.

* nivusers-subscribe@yahoogroups.com - Non-Invasive Ventilation Users

Vent Users - Many links related to ventilator use, both NIV and tracheostomy.

* Vent Users Mailing List Information page - Includes subscribing instructions and guidelines

Non-Invasive Ventilator Users - Photos and descriptions on NIV equipment setup.

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

 

Spinal Muscular Atrophy (SMA)

www.fsma.org - Families of SMA. Information, research, Kid's Corner. Links to sites in French, Spanish, German, and Italian.

www.SMAsupport.com - Many links, news, and information.

www.ourSMAangels.com - Click 'Our Kids' for personal stories and updates.

* - Send an email request to Laura by clicking on this link

* SMAfriends-subscribe@yahoogroups.com - In the message include a brief description of yourself

 

Post Polio Syndrome (PPS)

www.Post-Polio.org - News, directory, links, more.

 

Amyotrophic Lateral Sclerosis (ALS)

ALS Association

ALS Association - Oregon/Southern Washington

www.RideForLife.com - News, research, guides, links.

Internet Portal for the ALS Community

 

Spinal Cord Injury (SCI)

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

 

Equipment

www.CoughAssist.com - CoughAssist, In-Exsufflator, Cofflator

www.Respironics.com - Vent Manufacturer

www.Pulmonetic.com - Vent Manufacturer

www.CPAPonline.com - 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 www.Google.com, www.AltaVista.com, and other search engines, you might try the following Internet directories and information sites...

Internet Resource for Special Children

NICHCY - The National Information Center for Children and Youth with Disabilities

DMOZ Open Directory - Health / Conditions and Diseases

DMOZ Open Directory - ... Neurological_Disorders / Muscle_Diseases / Muscular_Dystrophies

AbleData Assistive Technology


Support Groups and Mailing Lists
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Website: ©2001-2014, Rich Clingman ()
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