Posts Tagged ‘Advocates’

If you are going to do just one thing this year to raise LBD awareness, tell Congress about LBD and about your support for a very important act going to the House floor for a vote as early as next week!

On Friday, the Parkinson’s Action Network announced the following news:
On September 23, the full House Energy & Commerce Committee unanimously passed by voice vote H.R. 1362, the National Neurological Diseases Surveillance System Act. The legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and multiple sclerosis.

The surveillance system will be developed and maintained by the Centers for Disease Control and Prevention (CDC). This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. (Visit the Parkinson’s Action Network to learn more about the bill.)

Your Representative needs to hear from you today! Make sure your Member knows that the Lewy body dementia community strongly supports this important legislation. LBDA has developed a custom message about LBD and this act for your use, and the Parkinson’s Action Network’s website does the rest!
Please voice your support by e-mailing your Representative in support of H.R. 1362.



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November is National Caregivers Month which is organized by the National Family Caregivers Association (NFCA). The month is dedicated as a time to thank, encourage, educate and support family caregivers. Each year there is a theme and this year the NFCA is encouraging people to speak up. The effort is concentrating on teaching caregivers how to effectively communicate with healthcare professionals. The ultimate goal being that caregivers become better advocates for their loved ones and themselves.

In honor of National Family Caregivers Month and NFCA’s 15th Anniversary, NFCA is hosting a free Family Caregiver Teleclass. There will be two, one-hour sessions available by phone and the web.

Here’s what you’ll learn:

Part 1: November 6

  • Develop a basic understanding of how the U.S. healthcare system operates
  • Understand your role on your loved one’s healthcare team
  • Describe how good communication can facilitate optimum health care
  • Know how to prepare for doctor office visits

Part 2: November 13

  • Develop strategies to establish rapport/collaborate with your loved one’s healthcare providers
  • Distinguish between different styles of communicating with healthcare professionals
  • Compose assertive messages for communicating in healthcare situations
  • Be prepared for and cope with an emergency room visit

Here are the details:

When: Thursdays – November 6 and 13 at 2 p.m. Eastern time.
How: Register Today by clicking HERE.

More information on the FREE National TeleClass is available HERE.

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