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rob
11-05-2008, 07:41 AM
Hi everyone,

Like many of you, I've been pondering the results of yesterdays elections. I was thinking about Sarah Palin, her son who has Downs Syndrome, and her statement that if elected, people with mental disabilities would have a friend, and advocate in the White House. That got me thinking. Now, we are all aware of the fact that a significant number of people diagnosed with Lupus are African-American women. I think our new First Lady come January, Michelle Obama, would be an excellent Lupus advocate. I wonder if she knows anyone with Lupus. I wonder how you would go about getting someone, like a First Lady, to be an advocate for people with Lupus.

Just imagine what could be done in the areas of Lupus awareness, and research if we had an advocate in the White House promoting the cause. There could be more funds for research, Lupus could possibly become a household name like so many other diseases that recieve all the publicity, yet affect far fewer people than Lupus does. More awareness with the public, and more importantly, awareness in the medical community of the disease would be an absolutely fantastic thing.

I'm wondering what other peoples thoughts and ideas are on this subject. I'm sure Saysusie will want to chime in on this one.

coltsfan
11-05-2008, 08:31 AM
Wonderful idea, Rob.
There must be a way to get the idea up to 1600 Pennsylvania Ave.
Can't wait to see what others have to say.

KathyW1958
11-05-2008, 08:33 AM
Hi Rob,
I am wondering too if she would be an advocate for the promotion of Lupus research. I think it would be very interesting if all the people on here penned a letter to her directly if she would hear us and respond. It would be interesting. What do you think?

Hugs,
Kathy

Saysusie
11-05-2008, 09:14 AM
Michelle's farther died from MS, so she is no stranger to auto-immune diseases and how they affect the person, their family and their lives. I do not see anything wrong with us presenting this wish to the First Lady Elect.
We need to discuss what would be the best way for us to do that!

So, let's keep this topic going with ideas, suggestions, and hopefully, a plan!

Peace and Blessings
Saysusie

coltsfan
11-05-2008, 10:26 AM
I'm in. Whenever we get a plan formulated, just let me know what to do. I'll write letters, send emails, etc.

NoodleMom
11-05-2008, 12:20 PM
This is a great idea. I am also in whenever we get a plan. Tell me what to do and I will do it.

K

rob
11-05-2008, 12:29 PM
I'm going to put my thinking cap on, and start doing a little research. I have a family friend who is a retired state senator, I'm going to contact her and see if she has any ideas, or advice on how to get something like this going. This could prove to be a real challenge, but I believe it can be done. Keep the ideas coming everyone.

Rob

Oluwa
11-05-2008, 02:37 PM
FYI...

Advocacy Day
Save the Date: Advocacy Day 2009 is March 2-3.

Advocacy Day 2008 was....On Tuesday, March 11, 2008 more than 300 individuals with lupus, their families, and health professionals urged Members of Congress to increase government funding for lupus medical research and enact legislation that will greatly expand federal efforts on lupus. The advocates, representing 37 states, participated in the Tenth Annual Lupus Foundation of America (LFA) Advocacy Day.

Advocates urged lawmaker to increase funding for biomedical research supported by the National Institutes of Health and epidemiological research sponsored by the Centers for Disease Control and Prevention. They also urged Members of Congress to enact the Lupus REACH (Research, Education, Awareness, Communications and Healthcare) Amendments Act (H.R. 1192 and S. 1359).

United States Senators Patty Murray (D-WA) and Robert Bennett (R-UT), who introduced the Lupus REACH Amendments Act in the Senate, received the Distinguished Lupus Leadership Award for sponsoring the legislation which will further federal efforts to combat lupus, address gaps in research, and heighten awareness of lupus symptoms and health effects among the public and health professionals.

Advocates met with approximately 200 Senators, Representatives and congressional staff members to educate policy makers on lupus and its impact on individuals and families. The advocates were supported by thousands of lupus e-Advocates across the nation who also participated in LFA Advocacy Day by sending email messages or placing phone calls to the offices of their United States Senators and U.S. Representative.

In past years, LFA lupus advocates have been effective in advancing lupus research and education programs conducted by the federal government, including:

coordinating efforts among the various federal agencies with an interest in lupus;
securing millions of dollars for the first-ever comprehensive national epidemiological study on lupus;
opening new sources of federal funding for biomedical research on lupus;
obtaining changes in draft Social Security Disability regulations which will enable more people disabled by lupus to receive benefits;
securing changes to regulations governing the Medicare Part D Prescription Drug Benefit to pay for prescription drugs required to treat lupus;
partnering with various agencies of the U.S. Department of Health and Human Services to increase public recognition of the serious consequences of lupus.

For more info, follow the links....

http://capwiz.com/lfa/issues/bills/

http://www.lupus.org/webmodules/webarticlesnet/templates/new_actionadvocates.aspx?articleid=692&zoneid=55

http://www.lupus.org/webmodules/webarticlesnet/templates/new_actionadvocates.aspx?articleid=898&zoneid=55

Pretti in Pink
11-05-2008, 03:32 PM
Great idea Rob! I look forward to hearing more ideas.

Saysusie
11-05-2008, 05:12 PM
Leave it to Oluwa to provide us with pertinent information and resources to guide us in our new quest!

That was excellent, Oluwa. Thank You
Peace and Blessings
Saysusie

buddhabelly
11-05-2008, 07:55 PM
Wow, this is so exciting. There's hope out there for us. :) Great idea Rob! I'll be here to help out. :wink: