This
is in response to your communication of October 25
received through MDA's Web site seeking information
for your great nephew Zachary about congenital muscular
dystrophy (CMD). Please be assured that MDA is concerned
for your great nephew's well-being and stands ready
to assist him to the full extent of its program while
continuing in its relentless efforts to conquer neuromuscular
conditions through worldwide scientific research.
For
those affected by congenital muscular dystrophy or
any of the 40 neuromuscular diseases encompassed by
MDA's program, MDA offers a broad program of direct
services -- including a nationwide network of 230
hospital-affiliated clinics staffed by teams of top
health professionals who can advise individuals about
the medical management of neuromuscular conditions.
By registering with their local MDA office, Zachary's
family will be eligible to receive MDA services as
well as our newsmagazine "Quest" which is
published 6 times each year.
You
can obtain information about MDA services -- including
an clinic appointment and support groups – by
calling MDA toll free at 1-(800) 572-1717 for the
number in Missouri of your family's nearest MDA office.
The address and phone number for the local MDA office
can also be accessed through the "Zip code Locator"
page of MDA's Web site by clicking on http://www.mdausa.org/locate/
and inserting the zip code where indicated. If you
would rather forward Zachary's U.S. postal mailing
address or zipcode to me at arb@mdausa.org, we'll
send you the telephone and address of the appropriate
MDA Program Services Coordinator to contact in the
Missouri area.
The
term congenital muscular dystrophy encompasses a variety
of disorders which are characterized by a specific
structural change within the muscle that prohibits
normal muscle functions and development. Research
is continuing so that we may learn why the skeletal
muscle is affected in this way. Much research is being
funded in order to understand the process involved
in the various muscle functions and myogenesis, which
is the growth and development of muscle tissue.
To
assist you, we're pleased to send you a selection of
material on CMD and to refer you to the following items
found on MDA's Web site on CMD which you can locate
by clicking on the address indicated.
When
Muscular Dystrophy Starts Early (Congenital MD)
Site
Map for www.mdausa.org A "thumbnail" guide
to MDA's Web site.
Additionally,
if you have access to the Internet you may wish to
browse MDA's
website for nearly 700 pages of informational
and educational materials. MDA's home page allows
users to access current news, MDA disease information,
publications, research and special news updates, copies
of the MDA newsmagazine QUEST, links to other web
sites and many other features. The search
feature permits you to locate pages within our
site on the topic of your choice, such as congenital
muscular dystrophy.
Please
keep us informed of the address as your web site for
Zachary develops. Thank you for reaching out to MDA
and we hope this information is helpful to you and
your family.
Kindest
regards . . .
Sincerely,
Anne
Blacher
MDA Web Site
Muscular
Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
1-800-572-1717
520-529-5454 - Fax
