Muscular Dystrophy (MD)
and Related Neuromuscular Conditions (NMC)
Muscular Dystrophy and related Neuromuscular
Conditions. These conditions are characterised by loss of muscle strength,
as progressive muscle wasting or nerve deterioration occurs. They are mainly
inherited, can cause shortened life expectacy in some conditions and there are
no cures. The conditions affect boys, girls, men and women of all ages,
occur across all ethnic groups and often more than once in on family.
"If you have the
same condition as someone else you should not compare yourself with them.
Everyone is different, even if you have the same condition!"
Muscular Dystrophy
Associations
Muscular
Dystrophy Association of New Zealand
Muscular
Dystrophy Association of Australia
Muscular
Dystrophy Association of USA
Muscular
Dystrophy Group of England and Northern Ireland
Muscular
Dystrophy Italian Association
Muscular
Dystrophy Ireland
Muscular
Dystrophy Netherlands
Europeans
Alliance of Muscular Dystrophy Associations
Information
Respironics.....Respiratory
Management
Neuromuscular
Diseases - More Information
Neuromuscular
Syndromes
Understanding
Spinal Muscular Atrophy - Useful Information
on SMA type I, II and III
Kugelberg
Welander Disease = Juvenile Spinal Muscular Atrophy
Families
Of SMA Home Page -
Alot of families here
MUSCLENET
Living SMArt
- A Newsletter for Adults
with SMA
101
FAQ's about MD - MDA Australia
Moving
Mountains without Muscles
- A book written by Thomas Charles Bailey
OUR
MAN SAM - A book written By Susan Bayle
about Sam's life with DMD
Non-Invasive
Ventilator Users
Quest-
USA Magazine Online
DMD (Duchenne
Muscular Dystrophy) Forum - includes a forum
(message board, chat room) for parents,families,friends and individuals
facing the challenge of Duchenne Muscular Dystrophy
Support Groups and Email Lists
MD-List
(Mailing) - A mailing list for those with Neuromuscular
Disorder's
Vent
User's Support Page - People on Ventilators can
get some good information
JTSMA-
Jennifer Trust for Spinal Muscular Atrophy
Friends
Of JTSMA - E-Mail Directory
Spinal
Muscular Atrophy - A Fact
Sheet on SMA Type I, II, III
Strength-L
Discussion List Home Page - A mailing list for
woman with NMC's
MD-Net!
- International MD Contact List - Join the list
and get contacts
Spinal
Muscular Atrophy e-mail list -
A mailing list for people with SMA
Living SMArt
- A Newsletter for Adults
with SMA
-
People with DMD or family and friends that know someone with DMD
Some Neuromuscular Conditions
(If
condition is not listed look up one of the MDA Associations)
Reflex
Sympathetic Dystrophy Syndrome (RSDS)
Congenital
Myotonic Dystrophy - Information
on CMyD
FacioScapuloHumeral
Muscular Dystrophy Society -
Message Board, Chat, Information etc.
Guillain-Barré
Syndrome (GBS) -
What is GBS?
Australian
Leukodystrophy's -
What
are the congenital myopathies? -
Some interesting information
FacioScapuloHumeral
(FSH or FSHD) Muscular Dystrophy
FacioScapuloHumeral
Muscular Dystrophy Society
Spinal
Muscular Atrophy Type 1, 2 and 3
Oculopharyngeal
Muscular Dystrophy
CMT UK-
Charcot Marie Tooth Conditions
ALS Association
- ALS is a progressive disease of
both upper and lower motor neurons
Primary
Lateral Sclerosis - (PLS)
is a progressive, degenerative disease of upper motor neurons
Personal Pages: Dealing With SMA
Melissa's
Page -A very good site
on how life is with SMA and what SMA III is
Those
2 Live - Lori, my very good friend, has a neat
site and web cam too. Lori also has SMA
Kristin's
Home page - Awesome site and nice pictures, we
have alot in common. Kristin passed away 2001, will be missed
Tufty's
Nuttree - Rock Chick, into Heavy Metal music,
come and say hi
Mike
Cunning's Home page -
Mike's son Andrew has SMA II, a very good site!
Michael
Briggs Home page (Photogrif) - Scuba Instructor
and is into Lava Lamps
Danielle
L. Siltala Memorial (1975-1998) -
Michael's girlfriend sadly missed
John
Farese - John is 44 years
old and one of the oldest persons to reach that age after being diagnosed from
birth with SMA
Susan
Tomlin's KWS Page - Nice home page with loads
of SMA links too
MJ's
Home page - MJ is 12yrs old and has achieved
alot in her interests, Girl Guides, Winners on Wheels and writing stories.
Has a nice picture on her home page too
Personal Pages: Dealing With Neuromuscular
conditions...
Ryan's
Cafe - My Buddy, from Australia, we have
meet here in Auckland after chatting on the net
Mark's
Hairy Page - Another friend with a neat site
Mark's
Rat Page [adult] - Speaks for itself, check it out
Matt's
Home page - Matt has CMD and he is a founder of an MDA Teens Club in Yahoo
Kevin
M. Rudolph's Exciting World - Another neat friend (link not work yet)
Amber's
Home page - A friend of mine who has CMD (link not work yet)
Dove's
Home page - A MDA Camp lover.
Maureen's
Home page - Maureen has DMD and she has a great home page about her
Kerrie's
Home Page - Kerrie
has a son Ryan with DMD, we finally met in Brisbane 2001 during my N.E.W.S tournament
:)
Petri
Niemelä Home page - Petri lives in
Finland and he has Congenital Myopathia and he plays wheelchair hockey
too
Sherry's
Place - Sherry has a son Dylan and he's
very cute too. Sherry is on the DMD Forum
Spicebabe
and Brett's Place - Brett
has DMD and spicebabe is his sister and they are very caring for each other
David
Hebbend's Home page - Dave is a neat friend.
Dave also plays electric wheelchair sports and is in the same team as me,
The Power Blacks
Joe's
Home page - Joe talks
about his life and meeting Ang his girlfriend, they are an inspiration
Daniel
Howe's Home page - Point of View, A neat site
about Auckland/New Zealand, also has some nice poetry
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