Please either write your own letter or you can copy/paste ( control c for copy and control v to paste) on email to your Congress Representatives. For the first time every we were able to get funding for specifically only SLE. Now it is in danger of being cut or deleted completely. Plus the site that sent this to me is wealth of information about lupus.
This site is excellent if you are interested in participating in research studies, clinical trials. I am sorry that you are going to need to scroll to read it left to right.
Oh easiest way is to just highlight letter than do copy paste ..on to your own email. I forgot to mention to highlight first...you can also left click which brings up copy and paste but you will still need to highlight what you want to copy than paste.
Also for those of you in Northern Calif they are having Research Convention in SF that I believe is open to all. It is also a great place to find ways to advocate for lupus and just volunteer.
They also list all major Lupus sites for information here in US. Look under Our Partners...gives Lupus Organizations Nationwide!
So please take the few minutes to either copy paste or write a small letter yourself to your Congressional reps. Thanks ..it would be so wonderful if better treatment is discovered!
Also it has site on it about alleviating lupus racial disparities.
so thank to all who take the time to write and try keep money we finally won for research on our disease!
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December, 2012 |
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Tell Congress -
NO CUTS TO BUDGETS AFFECTING LUPUS RESEARCH!
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Dear Lupus Community,
As the old saying goes, there is POWER in numbers. It’s time for our voices to unite and advocate on behalf of people with lupus.
Congress will be meeting shortly to discuss many financial issues. Among them are proposed cuts, called “budget sequestration,” to the National Institutes of Health and the U.S. Food and Drug Administration budgets. These reductions would deeply jeopardize lupus research as well as drug development and availability.
With the momentum of thousands sending the same message, we can move mountains. Please email or mail your representatives in the U.S. Congress expressing your concerns about the effects of this proposed action. Below is a sample letter to send as-is or adapt in your own words.
To find out how to contact your state Representative and Senators, visit these two websites:www.house.gov, www.senate.gov.
Thank you for helping impress upon Congress the absolute necessity of avoiding budget cuts that would set progress back years. As a community, we can make a difference in the future of lupus research and care.
Sincerely, 
Margaret Dowd
CEO & President, Lupus Research Institute
Below is a sample of the letter you can send to your representative:
Dear Representative __________ or Dear Senator __________,
As a lupus patient and one of your constituents, I strongly urge you to support efforts that would avoid automatic budget sequestration and the devastating effects it will have for lupus patients.
Without some compromise to avoid the “fiscal cliff” critical agencies -- especially the National Institutes of Health and the Food and Drug Administration – will be hit with across-the-board cuts of 8.2 percent to all programs and activities in January.
This level of cuts could actually translate into a loss of as much as $2.8 billion from NIH’s extramural research program. There is currently a great momentum in the lupus research enterprise. Sequestration would significantly reduce the NIH’s ability to pursue innovation and translational research in lupus, as well as myriad other diseases and conditions. Approximately 2,300 fewer new and competing grants would be awarded by NIH, seriously affecting jobs and research programs at universities and research institutions throughout our nation. The negative impact on our nation’s health and international competitiveness will be impossible to estimate. It may take generations to recover the lost talent driven from the research field.
Sequestration would also take $319 million from the FDA budget, likely forcing major staff reductions. The first FDA drug approval for lupus in over 50 years became a reality little more than a year ago. Many more possible future drugs for lupus are now undergoing clinical trials. We cannot afford as a nation to hamstring this agency at a time of great medical progress. No other public health agency touches patients and consumers in as many important ways as the FDA.
As you know, the federal government would enact sequestration in January at the midpoint of its current fiscal year. Allowing reductions of this scale in such a short timeframe will be calamitous for the agencies. Therefore, we need positive action from Congress in the time remaining in this session.
I urge you to work with your colleagues in both parties and in the Administration to find a balanced solution to our nation’s debt crisis that cancels the requirements for the automatic budget sequestration process.
Sincerely,
Your Name
Address
The LRI: Closing in on the Cause, Going for the Cure
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