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Entries in Lupus Foundation of America (2)

Wednesday
Mar092011

Exploring new discoveries...

Did you feel the power of discovery in the air today?  March 9, 2011 was a day of celebrating discoveries around the nation.  Whether honoring NASA's Shuttle Discovery who returned from space for the last time or finding out that the FDA had approved Benlysta, the first drug approved for use in Lupus patients in 56 years!  The monthly infusion drug is not going to be suitable for all Lupus patients, but the FDA approval of Benlysta is a huge step forward and encourages innovative discoveries on the path toward finding new and better Lupus medications.

Sandra Raymond, of the Lupus Foundation of America tweeted "Historic day for people w/ lupus & families! FDA approval of Benlysta catapults lupus into a new era of diagnosis & treatment".  What brings me the most hope is that the approval of Benlysta is not simply another step along the road for Lupus Awareness but that it is a huge leap for the Lupus community of patients, family, friends, care-givers and medical personnel.  

The online Lupus community shares and engages, we work together to make each day a better one.  If I ease you through a tough time, when your joints are sore and you can't get out of bed one day, the next time I am achy I know you will be there to provide support and encouragement.  Discovering our common bond of living with Lupus is more than enough to create an instant friendship.  Benlysta will soon to be widely available to any Lupus patient whose doctor prescribes it.

I launched this website not knowing that today would be an historic day for the Lupus community yet I can't help but feel a sense of destiny and connection.  I am grateful that you have "discovered" it.  I will continue to share advances in Lupus Research on my journey to find the flair and prove that "Lupus Awareness is fun!"                 

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.