General News Stories ·MAY 2017
Lupus Link E-Newsletter
Calendar of Events
News from the Lupus Foundation of America, Inc.
May 01, 2017
• $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
• $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
Voclosporin Achieves High Rate of
Complete Remission in Lupus Nephritis
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.”
CALENDAR OF EVENTS
May 13, 2017
Springfield Public Library
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
November 29, 2016
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.
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.