Why the butterfly?  People living with Lupus often have a rash on their face called a malar rash.  Commonly called a 'butterfly' rash, it
appears across the nose and cheeks, in the shape of a butterfly's wings.  You will find a
different butterfly on each page, representing how different Lupus is for each person. What's New in Lupus News - Archived Articles



New Center Funded for Major Lupus Research 7.7 Million Gift to Focus on Search for Cause And Cure at Hospital for Special Surgery
NEW YORK, May 29 /PRNewswire/ -- A gift of $7.7 million has been given to the Hospital for Special Surgery (HSS) to open the Mary Kirkland Center for Lupus Research. The gift has been given by Katherine and Arnold Snider through their family foundation, Rheuminations, Inc., in memory of Mrs. Snider's mother who suffered from lupus. The goals of the Mary Kirkland Center are to identify the genetic and immune system determinants of systemic lupus erythematosus (SLE), to conduct patient-focused research to understand the most important disease features, and to improve the quality of life for lupus patients. The long range goal is determining the cause of, and hopefully finding a cure for the disease. Over 90% of victims are women.
By drawing on the extensive patient resources, biomedical expertise, and technology of HSS and its affiliated institutions including Weill Medical College of Cornell University, New York-Presbyterian Hospital, Memorial Sloan-Kettering, and Rockefeller University, rheumatologists at the Center will have unique and unparalleled abilities to develop cross-collaborations among specialists in hematology, cardiology, neurology, and obstetrics to support a multidisciplinary approach to SLE.
Lupus, a disease of the immune system with important health and lifestyle consequences for thousands of women, can affect skin, joints, kidneys, and the brain. It is striking for its female predominance and is often considered a "model" for the study of all systemic autoimmune diseases. "With the revolution in science at the genetic and molecular levels," says Stephen Paget, MD, Physician-in-Chief of HSS, "we are poised for unprecedented advances in lupus research. With the Snider's support, we are confident that our contributions to the fundamental knowledge about the causes and treatment of lupus will last far into the future and make a real difference in our approach to this debilitating disease."
In making the announcement of the gift, Katherine Snider said, "The decision to establish the Mary Kirkland Center at HSS was based on HSS's outstanding reputation as a leader in lupus research. In particular, we were very impressed by the collaborative culture that exists among its widely respected researchers, scientists and physicians. It was equally important to us to fund patient support programs which are clearly a priority at HSS. As a family that has lived with the burden of this disease, we are thrilled to help fund research that will hopefully contribute to finding the cure for lupus."
Biomedical, Genomics, & Clinical Research:
The Mary Kirkland Center will support cutting edge basic research specifically directed toward lupus. The basic research group is led by a team of three internationally recognized lupus investigators, Peggy Crow, MD, Keith Elkon, MD, and Jane Salmon, MD. The Center will recruit additional scientists from a broad range of disciplines and employ state-of-the-art technology to accelerate progress in this complex immune disorder. Among the targeted areas of investigation are control of cell death, regulation of lymphocyte function, and mechanisms of tissue damage. The large cohort of lupus patients cared for at HSS will participate in studies at the DNA and molecular level that will lay the groundwork for development of new and safer biologic therapies.
Clinical investigators will work closely with the Center's basic scientists to promote the "bedside-to-bench-to-bedside" approach that has become an HSS hallmark. Michael Lockshin, MD, Director of HSS' Barbara Volcker Center for Women and Rheumatic Disease, will direct the clinical component of the Center to study the special features of SLE. The Mary Kirkland Center research will tackle the challenging clinical manifestations, such as central nervous system disease and premature atherosclerosis that contribute to substantial disability and compromise the lives of lupus patients.
Education and International Awareness:
Access of lupus patients to high quality heath care and patient education are priorities of the Sniders and will be incorporated into the activities of the Mary Kirkland Center through educational initiatives developed by HSS staff. The Center will disseminate progress in both medical treatments for lupus patients and mechanisms of disease to patients and investigators through workshops, data exchange, and research conferences.
HSS' Lupus Research Leadership:
Since the late 1960s, HSS has been at the forefront of research in lupus. In 1993, it became the nation's first NIH sponsored Specialized Center of Research in SLE. HSS has one of the largest lupus registries for adults and children in the United States with essential clinical and DNA information on over 600 patients.
In recognition of the outstanding quality of research at HSS, the National Institutes of Health awarded HSS a grant of $1 million for renovation of the second floor immunology laboratories, a grant matched by the Hospital. This is now part of a larger initiative by HSS to enhance all its research facilities.
The Mary Kirkland Center will occupy space in the newly renovated facilities in the Caspary Research Building. It will have an Oversight Committee, a Directorate and an External Scientific Review Board to oversee the Center's development and programs.
Founded in 1863, the Hospital for Special Surgery (HSS) is the world's leading orthopedic, rheumatologic and rehabilitation specialty hospital. HSS is an academic teaching hospital affiliated with Weill Medical College-Cornell University. The HSS research institute is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. The hospital is located at 535 East 70th Street, New York, NY 10021, telephone number 212-606-1400, http://www.hss.edu.



Internet Gives Lupus Patients Private New Gateway to Landmark Nationwide Clinical Trial
CAMBRIDGE, Mass.--(BUSINESS WIRE)--May 14, 2001-- At www.veritasmedicine.com, Lupus Patients With Kidney Disease Can Learn About Current Research and Confidentially Pre-Qualify for Major Studies Conducted Nationwide
Americans who suffer from Lupus, a debilitating disease affecting an estimated 1.4 million people in the U.S., can now turn to the Internet to confidentially pre-screen themselves for an international clinical trial being conducted in one of over 45 different locations nationwide. The landmark clinical trial is evaluating a treatment that researchers hope will prove to halt the deterioration of kidney function in lupus patients, one of the most common, debilitating and deadly consequences of the disease. Lupus patients and their physicians can learn more about cutting-edge research in lupus and determine whether they meet basic pre-screen criteria for the trial--without revealing their identity and before deepening their involvement in the enrollment evaluation process. Patients can find out whether they pass the pre-screen at www.veritasmedicine.com/lupus or by calling 1-877-5-TRIALS (1-877-587-4257) and will then be better prepared to decide if they want to directly learn more from the researchers who are conducting the studies.
There is no cure for lupus, a disease that causes the immune system to attack the body's own tissue. Lupus most commonly affects women between the ages of 15 and 44, and resultant kidney disease is a leading cause of sickness and death. Kidney complications occur in up to 75 percent of patients with lupus, resulting in loss of kidney function, kidney failure and the need for chronic dialysis and aggressive drug treatment. The lupus clinical trial featured on www.veritasmedicine.com/lupus is studying an experimental oral therapy, called Toleragens, that seems to work by targeting anti-DNA antibodies which are thought to play a role in the underlying mechanism of the disease. If effective, patients who receive the experimental drug are expected to have fewer renal flares and improved kidney function. The average annual cost of dialysis in the U.S. is $40,000 for every lupus patient. Approved treatments for kidney dysfunction in lupus have increased 10-year patient survival, but their side effects and powerful toxicity can cause significant sickness and death.
"In addition to providing lupus patients with confidential, online enrollment assistance, www.veritasmedicine.com is also pleased to offer comprehensive information about current lupus research and investigational treatment options authored by one of our distinguished physician-scientist editorial panel members," said John Yee, MD, chief medical officer at Veritas Medicine. "We combine this original content information with an individualized match-making process to help chronically ill patients gain access to important new treatments, and to confidently, knowledgeably and efficiently take control of their participation in clinical research."
About Veritas Medicine:
Veritas Medicine is a unique, interactive resource where physicians, patients and their families can review cutting-edge research, treatment options and corresponding clinical trial options for over 35 different life-altering disease states. On the site, original information on current research and investigational treatment options is available to help individuals make well-informed decisions about their care. Authored by physician-scientists from leading academic medical centers, this content includes lupus, Alzheimer's, diabetes, multiple forms of cancer, psychiatric conditions, neuromuscular diseases, gastrointestinal disorders, depression and Parkinson's Disease.
Veritas Medicine also offers a sophisticated, algorithm-based clinical trials matching mechanism, never before offered online, which is completely interactive and allows patients to focus their search on those trials for which they are likely to be eligible. Patients can quickly and easily search the database without entering any personally identifiable information. Veritasmedicine.com is a resource for clinical trials that are sponsored by both government and industry clinical researchers. Veritas Medicine is a member of Hi-Ethics (Health Internet Ethics) and adheres to the highest standards in online privacy and security.



Breast Implants Do Not Raise Tissue Disease Risk
NEW YORK (Reuters Health) Thursday April 12 - Although questions have been raised about whether breast implants may increase women's risk for rheumatoid arthritis and other disorders that affect connective tissue, growing evidence fails to find such a link. A new study of more than 11,000 women in Denmark shows those with breast implants were no more likely than other women to develop connective tissue diseases.
The study followed women who had breast implants--containing silicone, saline solution or other materials--between 1973 and 1995. Their rates of connective tissue disease were compared with those of a group of women seen at plastic surgery clinics during the same period, as well as with rates in the general public.
Women with breast implants showed no elevated risk for ''definite'' connective tissue diseases such as rheumatoid arthritis, lupus and systemic sclerosis--a disease in which scar tissue accumulates in the joints and organs and on the skin. All of these disorders involve an abnormal immune system reaction.
Researchers led by Dr. Kim Kjoller of the Institute of Cancer Epidemiology in Copenhagen report the findings in the April 9th issue of the Archives of Internal Medicine (news - web sites).
Women who received implants were no more likely to have any connective tissue disease than were women who underwent other cosmetic procedures. But all of these women had higher rates of ''ill-defined'' connective tissue problems compared with the general public. These disorders included general muscle pain and chronic pain of the muscles and joints known as fibromyalgia.
The reason for this higher rate is unclear, but according to the researchers, it indicates that women who seek cosmetic procedures have higher rates of non-specific conditions that affect connective tissue.
Breast implants can come with complications such as infection, the build-up of scar tissue around the implant and implant rupture. So far, however, studies have not turned up evidence of a link to connective tissue diseases--despite some case reports in the 1980s that suggested silicone implants were linked to systemic scleroderma.
This study, Kjoller's team writes, ``lends further support to the conclusions of earlier investigations and of independent review panels that an association between silicone breast implants and definite (connective tissue disease) has not been demonstrated.''



Eminent Rheumatologist Treats Patients in International Clinical Trial of Lupus Therapy Using a New Therapeutic Approach Called Tolerance Technology
PORTLAND, Ore.--(BUSINESS WIRE)--April 11, 2001--The first of up to 300 participants selected to take part in this international clinical trial are being treated with a new therapy known as Toleragens(R).
This therapy is designed to arrest the production of disease-causing antibodies without suppressing the healthy functions of the immune system. Elizabeth Tindall, M.D., from a rheumatology research center, was selected as a lead physician to begin enrollment of individuals suffering from lupus kidney disease. This large-scale Phase III trial is evaluating the potential of LJP 394 to prevent or delay renal flares, reduce the need for treatment with high-dose corticosteroids and/or chemotherapy drugs, and improve a patient's quality of life.
Lupus is an antibody-mediated, autoimmune disease affecting approximately one million individuals in the United States and Europe. A chronic life-threatening condition, lupus occurs most commonly in women, who usually develop the disease in their childbearing years. The most common treatments -- high doses of corticosteroids and/or chemotherapy drugs -- have not changed in the last three decades. These drugs are toxic and suppress the entire immune system increasing the opportunity for serious infections, fragile bones, hypertension, sterility and cataracts.
"We look forward to offering patients a treatment option that can potentially reduce the number of renal flares caused by this disabling disease," said Dr. Tindall. "Perhaps this treatment can help lupus patients remain functional and active." LJP 394 uses Tolerance Technology to build Toleragens, a class of therapeutics that are designed to arrest the B cells that produce disease-causing antibodies by binding to receptors on targeted B cells. This action delivers a specific and potent "off" signal that causes them to become inactive or to die. LJP 394 could provide physicians with an entirely new weapon against lupus kidney disease. This drug candidate is being developed by La Jolla Pharmaceutical Company.
The Phase III trial will involve individuals with a diagnosis of systemic lupus erythematosus (SLE) who also have a history of kidney disease. Individuals interested in learning more about this trial are encouraged to call 888/30-LUPUS (888/305-8787).



Dose Dependent Response Reported by La Jolla Pharmaceutical At International Lupus Conference
BARCELONA, Spain, March 28 /PRNewswire/ -- Three papers on the results of La Jolla Pharmaceutical Company's (Nasdaq: LJPC) Phase II/III trial of its lead drug candidate for lupus, LJP 394, were presented at the 6th International Lupus Conference held March 24-28 in Barcelona, Spain. The Company's Executive Vice President of Research, Dr. Matthew Linnik, discussed results showing that as the dose of LJP 394 was increased, the number of renal flares decreased in drug-treated patients relative to placebo-treated patients (a dose-dependent response). A dose-dependent response is a hallmark of reproducible drug activity. The Company is currently conducting a Phase III trial designed to confirm the ability of LJP 394 to treat lupus kidney disease.
In the Phase II/III trial, these results were observed in the 89% of patients with high-affinity antibodies to LJP 394. Specifically, during the induction phase of the trial, when patients were treated with 100 mg per week for four months, there was only one renal flare in the drug-treated group versus eight renal flares in the placebo-treated group. During the maintenance phase, when patients were treated periodically for up to 14 months with 50 mg per week, there were six renal flares in the drug-treated group versus 13 renal flares in the placebo-treated group. Thus, there was an observable dose-dependent difference in the ratio of renal flares during the induction phase when compared to the maintenance phase of the trial (1:8 versus 1:2).
"These Phase II/III data are encouraging and suggest that treatment with LJP 394 may provide significant clinical benefit to lupus patients suffering from kidney disease," said Dr. Linnik. "In the trial, we observed a clear dose-dependent reduction in renal flares. Dose dependency is an important scientific observation which supports our decision to treat all patients in the current Phase III trial with 100 mg per week."
Renal flares are life-threatening episodes of disease activity during which kidney tissue is destroyed and kidney failure can occur. In lupus patients, renal flares can lead to a loss of kidney function, kidney failure, and the need for long-term dialysis.
The three papers were presented by Matthew Linnik, Ph.D., Executive Vice President of Research, La Jolla Pharmaceutical, and Donato Alarcon-Segovia, M.D., Professor of Medicine, Rheumatology, Universidad Nacional Autonoma de Mexico, General Director of Instituto Nacional de la Nutricion in Mexico City and a leading lupus clinical researcher. Dr. Alarcon-Segovia presented a paper entitled "SLE Trial Shows Fewer Flares in LJP 394-Treated Patients with High-Affinity Antibodies to LJP 394: 90-05 Trial Results." In patients with high-affinity antibodies to LJP 394, time to renal flare was significantly increased in the drug-treated population when compared to the placebo-treated group. In the Phase II/III study, more than 200 patients were enrolled and treated for up to 18 months, although the trial was ended prior to completion.
Dr. Linnik presented a paper entitled "Effect of LJP 394 on Patients with Greatest Impairment of Renal Function at Baseline in the 90-05 Trial." In a group of 27 lupus patients with poor renal function, there were no renal flares in the 11 LJP 394-treated patients with high-affinity antibodies to the drug.
Dr. Linnik also presented a paper entitled "Affinity of Antibodies for LJP 394 Influences Pharmacodynamic Response to LJP 394 in SLE Patients with Positive dsDNA Antibody Titers," which reports that LJP 394 treatment reduces a patient's antibody affinity. In the Phase II/III trial, when patients with high-affinity antibodies to drug were treated with 100 mg per week of LJP 394 for four months, their average affinity for drug was reduced by about 60%, whereas the affinity of placebo-treated patients' antibodies was essentially unchanged (p < 0.001).
La Jolla Pharmaceutical Company is a biotechnology company developing therapeutics for antibody-mediated autoimmune diseases, such as lupus, which afflict several million people in the United States and Europe. The Company is conducting a Phase III trial of LJP 394 in patients with lupus kidney disease, a leading cause of sickness and death in these patients. The Company is also developing drugs for antibody-mediated stroke, heart attack, and deep-vein thrombosis, and for other antibody-mediated diseases.



Key Finding Made in Autoimmune Disease Research
WASHINGTON, March 28 (Reuters) - Researchers said on Wednesday they have identified for the first time how the body creates a specialized type of cell that plays a key role in preventing the immune system from turning against the body's own healthy cells.
The findings could point the way toward possible new treatments for autoimmune disorders such as lupus, arthritis, and diabetes, according to scientists at the Wistar Institute in Philadelphia. In those ailments, the body's own cells are attacked by immune cells that normally should be warding off infectious agents such as viruses and bacteria.
The researchers said the body's immune system generates "regulatory T cells," which are pivotal in preventing the body from attacking itself. They said these regulatory T cells are finely tuned toward the recognition of the body's own proteins -- or "self" -- and that a failure to make a complete array of these cells may be an important factor in the development of autoimmune diseases.
The findings, published in the journal Nature Immunology, suggested that engineering different types of regulatory T cells in the laboratory could become a future strategy for combating autoimmune diseases.
T cells are the white blood cells that are important in controlling infections. Researchers said last year that as much as 10 percent of T cells in a normal animal are regulatory T cells, indicating their importance as a safeguard against autoimmunity.
"What's interesting about these regulatory T cells is that, although their purpose is to prevent autoimmunity, they themselves react against 'self,"' Andrew Caton, who led the research, said in a statement. "However, their properties have been changed so that instead of responding to stimulation by dividing and directing the elimination of infected cells, as a normal T cell does, they instead suppress the local immune response."



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