Heightening
Awareness
You can also help by raising public and legislative awareness
of the different neuromuscular disorders. The more that people
learn about this group of diseases, the greater the possibility
that sufficient funds will be raised for research and for assistance
to individuals with a neuromuscular disorder. We know of many
individuals and diagnosis-specific groups who have made a difference
by building awareness of the condition in their family. Here
are some of the successful approaches:
Write a letter to your community newspaper. In the
letter, ask the Editor to help you reach the community by
educating the public, including health professionals, on the
neuromuscular disease in your family. If possible, draw from
your personal experience to emphasize why it is important
to promote awareness, education, and research on neuromuscular
diseases. It is also a good idea to highlight previous efforts
in the cause as well as current projects and future activities,
such as seminars, the Web site, fundraisers, etc.
Reach your Representatives in Congress and ask your friends
and families to do the same. Some families have told us
they get discouraged about letting their Congressmen know
their concerns. They feel their condition is too rare and
lawmakers may be too busy to listen. The truth is that , as
a living testimony of the issues surrounding neuromuscular
disease, you are more likely to be heard. You can reach your
Congress Representatives in many ways. You can make an appointment
for a visit and write a letter or an e-mail. The Genetic
Alliance provides key
telephone numbers, names
of government agencies, as well as tips
on how to make a successful visit and on how to write
an effective
letter.
Participate at conferences, seminars, and health fairs. If
you enjoy speaking to people and are gifted in the area of
oral presentations, you can volunteer to speak at an appropriate
event. This can be a good opportunity to educate the public
about the congenital myopathies and share your experiences.
Another great idea is to attend these events and provide free
information brochures to others. Several Web sites, such as
the National
Organization for Rare Disorders (NORD), the Genetic
Alliance, the MDA,
and others post information on future events. Remember that
to become a speaker or provide brochures you must contact
the event coordinators and ask permission first. Also, check
this Web site in the future. We will be adding brochures in
PDF format that target patients and their families and brochures
that target physicians in the future!
Think of ways you can help raise awareness! Speak to your
relatives, friends, and community members. You can also contact
us if you want to share your ideas with us. Together,
we can make it happen!
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