Mar. 08, 2016

News

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

May 13, 2017
Annual Meeting
Springfield Public Library
Springfield, NJ

April 30th, 2017
Walk To End Lupus Now™
Morris County College

June 11, 2017
Walk to End Lupus Now™
Veterans Park, Hamilton Township, NJ

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

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

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November 29, 2016

#Givingtuesday

This is an annual event to help promote the mission and give back

for  the Lupus Foundation of America, New Jersey Chapter, Inc.

The goal of this event is to help raise awareness and funds to

support the foundation to improving the quality of life for

those affected by lupus through programs of education and

support, advocacy and research.

Help the foundation in our mission and support the cause!

Visit #givingtuesday or for more information

or click on the donate now button.

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Lupus Health, and Awareness 2016

The Lupus Foundation of America, New Jersey Chapter, Inc.  is dedicated to improving the quality of life for all people affected by lupus through programs of research, education, support and advocacy.  The foundation supports its mission through attendance at health fairs, speaking engagements, seminars, awareness events, and fundraisers.

A health fair is usually hosted by a local town, city, religious or civic groups,  or public entities  that allow organizations such as the foundation to participate by informing the general public about a particular condition, such as lupus.   This year the LFA, New Jersey Chapter, Inc. has attended approximately 17 health fairs at community colleges in Middlesex and Morris Counties,  and in addition we were in Somerset, Essex, Hudson, Union, and  Mercer Counties.

Speaking engagements are at private events held by a group of people interested in hearing more about lupus and how the Foundation educates, supports, advocates, and helps fund research on lupus.
The foundation has spoken at 6 functions, showing a film, and engaging the audience in awareness of the condition and what the foundation does that benefits people affected by lupus.  We have spoken before the Mason's in Newark, a lupus gala at Kean College, the Beulah Grove Baptist Church and the Center for Hope for Women and Girls in Newark.  We also spoke in West Orange at a private event, and the Morning Star Community Christian Center in Linden.  We spoke to approximately 600 people at these events.  We also, every year, speak at the Somerset Patriots ballpark, and are interviewed on their radio station.  We reach about 4000 people at the ballpark and their listening audience on the radio.

A seminar is an educational event that the Foundation sponsors informing people affected by lupus and the public about a specific topic within lupus, such as nutrition, stress relief, and exercise.  The Foundation has held approximately three educational events about lupus in the past year and scheduled another two or three, with topics ranging from nutrition, to stress relief,  to coping with the condition of lupus, to new therapy modalities.  Drs. Ammit Saxena and Olga Zhdanova spoke on Lupus Nephritis and what are the current treatments and what are the new treatments in clinical trials in Union, NJ.  We also hosted Healthy Eating with Chef Nikko  in Little Falls, NJ.  At our annual meeting Dr. Doruk Erkan spoke on managing lupus and Antiphospholipid Syndrome.   We maintained a lupus booth along with the Philadelphia Tri-State Chapter, at the NJEA Convention in Atlantic City where over 30,000 people attended.  Lupus Foundation was the featured charitable organization at this convention.

An awareness event and fundraiser is generally just that, and event that is sponsored by the Foundation, generally open to the public, and it is meant to be a social event where people affected by lupus and the public at large are made aware of what lupus is, how the Foundation helps, and what they can do to help people affected by the condition of lupus.  It is also how the Lupus Foundation of America, New Jersey Chapter, Inc.  raises the funds which keep the "doors open".    We have held over ten events in the past year to promote lupus awareness and raise money to support the foundation,  such as the two Fashion Shows and Beefsteak , which are very popular, the evening at the Somerset Patriots baseball game and a night with the New Jersey Devils at the Prudential Center.

NIH Releases A Plan to Expedite Lupus Treatments and Cures Action Plan for Lupus Research

Research Findings Provide Evidence of Progress and Hope For Improved Quality of Life

First-ever National Lupus Public Health Agenda Provides Roadmap to Improving Care and Treatment

Key Public Health Strategies for Lupus

Podcast

Ask the Experts - Social Security Disability & SSI Benefits for Those with Lupus

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