by Melinda Lang
September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon:
Connect with an association that works with your condition such as the CMTA, which provides patient support, public education, and promotion and funding of research http://www.cmtausa.org/
You can bring brochures (available when you join the CMTA) or information about your condition to leave at the office with doctors, physical therapists and any health care practitioner you visit.
The next time someone asks you a question, “What’s wrong with your foot?- or makes a comment like, “You walk funny.” or “You don’t look like you need that handicap parking permit” -rather then being offended, take a breath and start a conversation. Instead, try something like: “Thank you for noticing” – then tell them you have CMT, explain how it affects you and take a moment to answer their questions. Hopefully, instead of leaving angry, you will feel proud of yourself knowing you have just helped another person learn about CMT.
If your uncomfortable talking about yourself, perhaps you could distribute posters to libraries, pharmacies, doctor offices any public place that will display them.
Our you could hand out brochures at a health fair. Many health fair organizers will allow you to set up a table to display literature, bracelets, buttons, a banner (etc. )
CMT Awareness Month Kits are available from the CMTA here:
Get your AM 2013 Kit now and be ready to help. Each kit contains 10 AM posters, 10 AM postcards,10 CMTA STAR™ wristbands, 10 “What Is CMT?” brochures, and 10 “Hope & Promise” magnets.
Submit an article to local newspapers and health journals for publication during September, CMT Awareness Month. Write about yourself, or your child and how CMT effects you. Include symptoms, such as: loss of balance, weakness arms, legs hands & feet, tripping and falling. Write about how you were diagnosed, explain the difficulties of seeing doctors, who have never heard of CMT, even though it is the most common inherited peripheral neuropathy. For more facts on CMT visit here: www.cmtausa.org.
Contact your local television health reporter, and suggest a story about CMT and awareness month and tell them your story. Also, suggest they do a PSA (Public Service Announcements about CMT.
Tell your story to your High school/College alumni magazines.
For the past 3 years, I have visited a local college and spoken to physical therapy students about CMT. Perhaps a college or school in your area would welcome you to speak with their students.
You can write to your representatives and the president requesting more funding for rare disease research. Sign up with the MDA for advocacy alerts, and you will receive email notices whenever there is legislation that needs your attention. http://mda.org/advocacy
The MDA makes it easy to sign petitions or send letters to Congress by providing the necessary information to easily personalize. Also, a link is provided to quickly find your representative.
If you signed up with twitter, tweet messages about CMT throughout September and beyond. (sign up here: https://twitter.com/)
Follow the CMTA @CMTASTAR for tweet ideas.
Also, you can join the rare disease network and sign up for a study:http://rarediseasesnetwork.epi.usf.edu/INC/index.htm
What will you do for CMT Awareness Month?
Order your CMT Awareness items here: http://www.zazzle.com/cmtaatzazzle*
a portion of sales goes to CMT research!