Mar. 08, 2016

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General News Stories ·MAY 2017

Lupus Link E-Newsletter

Calendar of Events

News from the Lupus Foundation of America,  Inc.

May 01, 2017

Lupus Awareness Month got off to an exciting start yesterday as Congressional leaders released a spending bill that includes $13 million in new funding specifically to advance lupus research, education and awareness! The funding is part of a larger omnibus spending bill that funds the government for the remainder of this fiscal year, which ends September 30. This is great news and is an extremely important step forward in the fight against lupus. The bill includes: • $5 million to establish the first line item for a Lupus Research Program at the Department of Defense (DOD). This is a significant accomplishment! The new program will help us coordinate and strategically direct funding to the most promising lupus research projects. It also means that lupus researchers will not have to compete for scarce dollars against researchers from other disease areas. The program is dedicated entirely to lupus! For more than a decade, the Lupus Foundation of America (Foundation) has led the fight for a dedicated lupus research program at DOD, including testifying before Congress and authoring a white paper describing the connection between lupus and military service.

  • $6 million to continue funding for the National Lupus Patient Registry and Patient and Provider Education Programs at the Centers for Disease Control and Prevention (CDC). The bill supports research  
  examining the costs associated with lupus and its impact on quality of life, as well as continuation of programs to raise awareness, increase knowledge, and enhance the skills of those with lupus and their 
  health care providers.  Congress now has provided nearly $50 million in funding for the registry program!
  • $2 million to continue funding for the National Health Education Lupus Program at the Office of Minority Health. This funding will help advance clinical trials and the development of new treatments by
  supporting the implementation of a clinical trial education action plan that will help speed enrollment in clinical trials. Total funding for the program is now over $12 million!
 
The omnibus bill also provides over $34 billion for the National Institutes of Health (NIH), a $2 billion increase over last year! The NIH and the pharmaceutical/biotech industry are the largest sources of lupus funding and we will continue to work with the NIH to direct vital grant funding to lupus research. None of this would have happened without the grassroots outreach by lupus activists throughout the year! YOU made it happen. We are also deeply grateful to the Congressional Lupus Caucus Co-Chairs – Rep. Thomas J. Rooney (R-FL), Rep. William Keating (D-MA), Rep. Ileana Ros-Lehtinen (R-FL), Rep. Eddie Bernice Johnson (D-TX) – and the leaders of the House and Senate Appropriations Committees who championed funding for these vital programs.

Next Steps

Please follow us on Twitter and Facebook, and sign up to become a lupus activist to stay up-to-date on the latest news from Washington and to learn when your outreach to Congress can make the most impact in the fight against lupus. Keep the Momentum Going! Join Us In Washington, D.C.  The Foundation’s National Policy Summit has been critical in the fight against lupus. Join us in Washington, D.C. June 26-27 and help us realize even greater accomplishments! Registration is now open. Help us educate Members of Congress about the true nature of the disease and why more must be done to advance our cause on Capitol Hill. Visit http://www.lupus.org/summit to register and learn more.

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Voclosporin Achieves High Rate of

Complete Remission in Lupus Nephritis

Find out more

Aurinia Pharmaceuticals has announced top line results from a Phase 2b clinical study

of voclosporin for the treatment of lupus nephritis. In this study, nearly half of lupus

nephritis patients treated with a low dose of voclosporin, along with standard of care,

achieved complete remission after 48 weeks of treatment.

Sandra C. Raymond, president & CEO of the Lupus Foundation of America,

said the results are a welcomed development in lupus research.

“This is exciting news for this very serious form of lupus and these results

are very encouraging. As many as 40 percent of all people with lupus, and as

many as two-thirds of all children with the lupus, will go on to develop

lupus-related kidney disease. Having an effective treatment with fewer side

effects and long-term health risks will greatly improve the quality of life for people with lupus.

We eagerly look forward to implementation of a Phase 3 study,

which is expected to begin during the second quarter of 2017.”

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CALENDAR OF EVENTS

July 8, 2017
Lupus Foundation of America, New Jersey Chapter, Inc.
Elegance of Hope Dinner & Fashion Show Gala

July 15, 2017 · 7:00 PM
Sky Blue FC
Lupus Awareness Night
Yurcak Field, Piscataway, NJ
Rutgers University Campus

Thursday Night, July 20, 2017
SOMERSET PATRIOTS vs. New Britain Bees
Game Time: 7:05 PM Ticket Price: $11.00
Section 208 - 57 Seats Available

October  22, 2017
Walk To End Lupus Now™
Nomahegan Park, Cranford, NJ

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