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Muscular dystrophy is a genetic disorder
characterized by progressive muscle weakness
from muscle fiber degeneration and loss.
With disease progression, patients sometimes
become wheelchair-bound or bedridden. Most
patients eventually need help to meet the
needs of daily living. The main activities
of the Japan Muscular Dystrophy Association
(Corporation) are to promote research to
establish the pathogenesis of and find effective
treatment for muscular dystrophy, and to
provide medical care to the patients and
their families so that they can maintain
a good quality of life (QOL).
In our Association, there are
more than 3,000
members including patients, their
families
and their friends and supporters.
The major
purposes in establishing this
Association
were to exchange information
and to promote
research aimed at discovering
effective therapy
for muscular dystrophy. At the
present time,
members exchange many kinds of
information
personally, through the internet
and through
our Association, which encourage
patients
to live as active life as possible
and to
keep informed on the progress
of basic and
clinical research in muscle diseases.
Our
members have the opportunity
to meet each
other and discuss the common
problems they
face in their daily lives and
how to deal
with them, at regional and national
meetings,
conferences and seminars organized
by our
Association.
With our strong urging and support, the National
Institute of Neuroscience, National Center
of Neurology and Psychiatry (NCNP) was founded
in 1976. Here, world class research is carried
out into the pathomechanism of the muscular
dystrophies and towards developing the most
effective treatments for muscle diseases.
The NCNP has organized 4 nationwide research
groups for muscular dystrophies, including
two clinically oriented groups and two basic
science groups, focusing on the pathogenesis
of these diseases and developing gene therapy,
respectively. All groups are supported by
the Ministry of Health, Labor and Welfare,
Japan. Our Association coordinates these
research endeavors and works constantly to
obtain further financial support for these
research groups,
I sincerely hope that our Association can
continue to help solve and provide relief
to the problems of daily living our patients
face and promote further advances in the
research on the causes and treatment of these
muscle diseases.
ADDRESS
2-2-2 Nishi-waseda, Shinjuku-ku, Tokyo 162-0051,
Japan
TEL: (81)-3-5273-2930
FAX: (81)-3-3208-7030
| 1964; |
Started as Japan Society of Parents of Muscular
Dystrophy Children |
| 1965; |
The Society was renamed the Japan Muscular
Dystrophy Association at
the 2nd annual meeting |
| 1968; |
The Association was authorized as a corporation
(Shadan-Hojin) by theMinistry
of Health and
Welfare Japan |
At the present, there are more than 3,000
members in our association. The main office
is located in Nishi-waseda Shinjuku-ku Tokyo.
There are 8 regional block offices of Hokkaido,
Tohoku, Kanto, Tokai/Hokuriku, Kinki, Chugoku,
Shikoku and Kyushu, which organize unique
independent prefectural activities.The association
is managed by President Ms Shizuko Kawabata,
19 directors and 2 inspectors.
A: Accumulates information on muscular dystrophies
available to educate and enlight the disease
to patients, their families and public.
| (1) |
The Association organizes an Annual National
Meeting, a number of seminars and conferences |
| (2) |
The Association publishes a bimonthly journal
"Ichinichimo Hayaku (Hoping radical
therapy as earlier as possible)" and
many educational books of muscular diseases |
| (3) |
The Association is a member of World Alliance
of Muscular Dystrophy Association (WAMDA) |
B: Helps patients to adapt to their daily life
and to improve their quality of life (QOL)
| (1) |
The Association supports patients to improve
their lifestyle |
| (2) |
The Association provides medical seminars,
visiting disease evaluation, consultation,
camps and helps to be in employment |
| (3) |
The Association assists members to obtain
or borrow medical equipments including wheelchairs
and respirators. |
| (4) |
The Association tries to educate medical
and social aspects of mucular dystrophy to
public and patients. |
| (5) |
The Association establishes and administers
6 physical and social training units in Aomori,
Miyagi, Niigata, Saitama, Hyogo and Shimane
for non-hospitalized patients.. |
| (6) |
The Association appeals to the government
to design treatment regimens and to improve
social welfare. |
| (7) |
The Association establishes its homepage
providing the recent advance in research
works, mdical consultation, and forms mailing
lists of the members to exchange their thoughts
and knowledge. |
C: Promotes research into muscular dystrophy
| (1) |
The Association's great efforts and supports
to the Government to establish an research
institute for muscle diseases resulted in
founding of National Institute of Neuroscience,
National Center of Neurology and Psychiatry
(NCNP) in 1978. |
| (2) |
The Association cooperates research works
on the diseases as a member of nationwide
research groups of muscular dystrophy organized
and sponsored by the Ministry of Health,
Labour and Welfare Japan. |
Members' fee are the main source of income
of the Association. In addition, subsides
from the National Treasury, several foundations,
and donations from individuals and some groups
greatly contribute to the finance of the
Association.
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