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Posts Tagged ‘Dementia with Lewy Bodies’

It All Begins with Awareness…



Awareness builds knowledge.
Knowledge builds power.
Power builds research.
Research builds treatment.
Treatment builds hope.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

Click here for LBD Awareness Week Resources you can download, including our LBD Awareness Kit – filled with ideas and tips on how YOU can help make October 10-16, 2010 A Week To Remember.

If you have questions about raising LBD awareness in your community,
contact us at awareness@lbda.org or 404-935-6444, ext. 104

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I received the following information in an email from the LBDA about the upcoming Alzheimer Research Forum‘s webinar, Betwixt and Intermixed-Dementia With Lewy Bodies:

The Alzheimer Research Forum, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders like Lewy body dementias.

Their upcoming event, Betwixt and Intermixed-Dementia With Lewy Bodies has generated a tremendous response from the caregiver community, including some 90 questions on LBD diagnosis and treatment submitted from caregivers.

With this event, the Alzheimer’s Research Forum aims to increase awareness of dementia with Lewy bodies (DLB) among scientists and physicians, their primary audience. As such, the panel of LBD experts will focus largely on scientific research topics.

While the live event may address some clinical issues at a high level, at only one hour long it will be impossible to address the many caregiver questions that have been submitted. To ensure your questions receive the attention they deserve, the AlzForum editors have assembled them in a caregiver comment page and will be asking the panelists and the Lewy Body Dementia Association to respond offline to these questions after the event.

Some of this information can be found on the LBDA website now. Visit http://www.lbda.org/category/4115/publications.htm to read our many publications or watch caregiver educational videos on LBD at http://www.lbda.org/category/4116/multimedia-resources.htm.

For those who are registered for this event, only questions on the scientific topics should be submitted DURING the actual event. If you are a patient or caregiver and have questions in addition to those already posted, you are invited to submit them ahead of time via the AlzForum website at http://www.alzforum.org/contact.asp.

LBDA will work with the AlzForum editors to provide the fastest response to the most frequently asked questions so that LBD families now and in the future can all benefit from the answers. Due to the volume of questions, the reality of limited resources, and the availability of our LBD experts, there will be a modest delay before the answers are posted online.

We appreciate your patience while AlzForum and LBDA work together to develop the answers you need.

Sincerely,
The LBDA Team

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Alzheimer’s Research Forum will be hosting a scientific webinar titled “Dementia with Lewy Bodies – Dreadful, Common, Understudied?” on Monday June 15, 2009 at 12 noon Eastern Time for one hour.

Click here to learn more and to register. The LBDA also lists info about the webinar which can be found here.

After you register, you will get an e-mail confirmation with the dial-in telephone number and a “Join Now” box in the e-mail, that when you click on it, will take you to the webinar via your computer. Therefore, save this e-mail registration confirmation for Monday June 15, 2009 and use it to join the webinar a few minutes before 12 noon Eastern Time on Monday June 15, 2009.

**Please note: This will be a scientific webinar, therefore, it will be heavy on the science.**

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I came across this on the Yahoo LBD Caregiver’s site and is also found on the LBDA forums.

The Alzheimer’s Research Forum is running a nine part series on an international Alzheimer’s Disease/Parkinson’s Disease conference held in March of ’09 in Prague and on an international Dementia with Lewy Bodies/Parkinson’s Disease Dementia conference held a few days earlier in Prague.

Here’s a brief run-down I got from the above-mentioned sites:

  • Part 1 is about overlaps between neurodegenerative diseases, proteins, genetics, and biomarkers.
  • Part 2 is about a genome study of PD and MSA.
  • Part 3 is about diagnosing and researching DLB.
  • Part 4 is about the interplay between two proteins in DLB.
  • Part 5 is about imaging biomarkers.

Click below to read the difference parts of interest:
Part 1.
Part 2.
Part 3.
Part 4.
Part 5.

If you would like to join the Yahoo LBD Caregivers Yahoo group, click here. I also have a “join now” button on the bottom right of my home page. The LBDA forums can be found here.

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