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Entries in advocate (3)

Saturday
Mar122011

Lupus Advocacy is Fun.

I feel it is important to share why I am a proud Lupus Advocate and why I think Lupus Advocacy is fun.  So I wrote an article about it...

http://www.butyoudontlooksick.com/articles/lupus-information/proud-to-be-a-lupus-advocate-from-home/

Tuesday
Mar012011

Lupus Advocacy is important!

I know what it is like to go to Washington, DC to advocate for Lupus Research.  I remember the exhaustion... I remember the sore feet... and I remember why I did it.  I went to our nation's capitol because over 1.5 million Americans have Lupus.  Lupus is one of the lesser-known major diseases in the United States, Lupus is an autoimmune disease that effects each individual patient differently.  If I was on Capitol Hill today I would be joining the team of Lupus Advocates that are meeting with members of Congress, (or more likely, a Health Legislative Aide) today to discuss the importance of funding Lupus medical research by telling my story of what living with Lupus has been like for me the past 28 years.  I would tell you that it may not have been easy but it was "much better than the alternative".


If you have Lupus or someone you know has Lupus.  Please raise your voice and let your Senators and House members know that you are a constituent who is an advocate for Lupus and you vote.  Let your voice be heard...

The Lupus Foundation of America is going to Capitol Hill today to ask for:
 
Increase funding for Lupus Medical Research at the National Institutes of Health (NIH).
 
Fund the establishment of a Lupus Medical Research Program, established under the Congressionally Directed Medial Research Program (CDMRP), Defense Health Program (DHP), Department of Defense (DoD).

Continue funding for:

The National Lupus Awareness Campaign at the U.S. Department of Health and Human Services' Office on Women's Health (OWH) which increases public awareness of Lupus in order to increase early diagnosis of Lupus.

The Health Provider Education Campaign at the U.S. Department of Health and Human Services' Office of Minority Health (OMH) which increases health professional providers' awareness of Lupus to improve Lupus diagnosis and treatment.

Lupus has a tremendous financial cost to the nation, estimated at $31.4B annually, but the cost of inaction will only make those numbers grow.  We cannot afford to wait.  

Monday
Nov012010

"LA Lupus Lady" a Halloween costume that raises Lupus Awareness!


Not sure when I decided that I would be "LA Lupus Lady" for Halloween... After 26 years as a Lupus patient and a few years of being a Lupus advocate, I feel comfortable as @LALupusLady on twitter and once I chose my costume, or as my friend says my costume chose me. (Not unlike, a Lupus diagnosis...) I knew that I wanted to represent the strength and courage of the Lupus patient, the grace and beauty of being a Lady and most of all a sense that "raising Lupus Awareness is fun." The bright purple and orange are two colors of Lupus organizations that I support and advocate for. I enjoy finding the joy of Lupus and hope that you enjoy the video.

Amanda
@LALupusLady on twitter and "LA Lupus Lady" for Halloween!