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GET INVOLVED
HEIGHTENING AWARENESS
You can also help by raising public and legislative awareness of the congenital myopathies. The more people learn about this rare group of diseases, the greater the possibility that sufficient funds will be raised for research and for assistance to individuals with congenital myopathies. 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 most 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 on why it is important to promote awareness, education, and research into the congenital myopathies. It is also a good idea to highlight previous efforts in the cause as well as current projects and future activities (seminars, 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 email. 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), Genetic Alliance, and Muscular Dystrophy Association (MDA) (among 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!
Think of ways you can help raise awareness! Speak with 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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