The severity of lupus is influenced by both disease activity and the possibility of organ damage over time. Organ damage in people with lupus is thought to arise slowly over time due to an interaction of disease processes, possible co-existing conditions, and drug treatments. Levels of autoantibodies circulating in the blood are a primary indicator of lupus disease activity and can change over time, but these dynamics around the time of lupus diagnosis have not been well studied. The results of this study reveal differences in autoantibody profiles over time in people with lupus, with important ethnicity-related differences, and their relationship to lupus-mediated organ damage over time. The potential relationship between organ damage and steroid use in people with lupus is discussed.
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Showing posts with label lupus research. Show all posts
Showing posts with label lupus research. Show all posts
February 21, 2012
November 28, 2011
Long-Term Impairments of Functioning in Obese Women with Lupus
From our research e-newsletter
Relatively few studies have been conducted about the role and effects of obesity in the lives of people with lupus. Obesity is associated with disability, both in the general population and among people with lupus. Since up to half of people with lupus may be obese, it is important to determine to what extent specific functions (such as walking or climbing stairs) are impaired in people with lupus. Identification of preventable risk factors for disability, such as obesity, has the potential to decrease the negative effects of obesity on functioning in people with lupus.
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Relatively few studies have been conducted about the role and effects of obesity in the lives of people with lupus. Obesity is associated with disability, both in the general population and among people with lupus. Since up to half of people with lupus may be obese, it is important to determine to what extent specific functions (such as walking or climbing stairs) are impaired in people with lupus. Identification of preventable risk factors for disability, such as obesity, has the potential to decrease the negative effects of obesity on functioning in people with lupus.
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November 11, 2011
Lupus Research Report: Genetic Profiling Can Predict Some Lupus Manifestations
From our research e-newsletter
People with lupus can experience a wide variety of disease-related manifestations, including nephritis (kidney inflammation) and skin rashes. The variability of these symptoms likely results from underlying genetic factors. While most studies have focused on identifying the presence of specific genes that increase the risk of developing lupus, few studies have focused on which genes may give rise to which manifestations of lupus. Identification of which genes may be associated with which lupus manifestations could help facilitate the future development of personalized medicine for people with lupus.
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People with lupus can experience a wide variety of disease-related manifestations, including nephritis (kidney inflammation) and skin rashes. The variability of these symptoms likely results from underlying genetic factors. While most studies have focused on identifying the presence of specific genes that increase the risk of developing lupus, few studies have focused on which genes may give rise to which manifestations of lupus. Identification of which genes may be associated with which lupus manifestations could help facilitate the future development of personalized medicine for people with lupus.
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November 07, 2011
New Study Sheds Light on the Challenges of Developing Lupus Treatments
Lupus Foundation of America Funded Research First to Use Pooled Data from Previous Treatment Trials
Initial findings from a research study funded by the Lupus Foundation of America (LFA) the first-ever to use pooled data from five industry-sponsored treatment trials, will be presented during the annual scientific meeting of the American College of Rheumatology being held in Chicago, November 7-10, 2011. The study examines the effect of background medications taken by individuals enrolled in these clinical trials. This study is the first in a series of studies, and part of an overall initiative spearheaded by the LFA, that involves stakeholders from industry and key lupus opinion leaders to seek insights and trends from previous trials in an effort to improve the design of future lupus clinical trials. Due to the complexity of lupus, there is an urgent need for an arsenal of safe, effective, and tolerable treatments for lupus.
Visit our website to read more
Initial findings from a research study funded by the Lupus Foundation of America (LFA) the first-ever to use pooled data from five industry-sponsored treatment trials, will be presented during the annual scientific meeting of the American College of Rheumatology being held in Chicago, November 7-10, 2011. The study examines the effect of background medications taken by individuals enrolled in these clinical trials. This study is the first in a series of studies, and part of an overall initiative spearheaded by the LFA, that involves stakeholders from industry and key lupus opinion leaders to seek insights and trends from previous trials in an effort to improve the design of future lupus clinical trials. Due to the complexity of lupus, there is an urgent need for an arsenal of safe, effective, and tolerable treatments for lupus.
Visit our website to read more
November 01, 2011
Self-Reported Effects of Cutaneous Lupus on Quality of Life
From our research e-newsletter
Ultraviolet radiation from the sun can worsen symptoms of cutaneous lupus (CLE) and people with lupus may experience “photosensitivity.” The researchers interviewed CLE patients about their photosensitivity to help determine its effects on quality of life. Based on patient responses about their history of photosensitivity, patients were classified into one of three groups for purposes of comparison. Over half of all CLE patients included in the study reported experiencing photosensitivity, which had varying effects on quality of life. The results indicate that clinical interview questions can identify CLE patients with photosensitivity. Compliance with recommendations to avoid UV light exposure continues to be warranted in CLE patients.
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Ultraviolet radiation from the sun can worsen symptoms of cutaneous lupus (CLE) and people with lupus may experience “photosensitivity.” The researchers interviewed CLE patients about their photosensitivity to help determine its effects on quality of life. Based on patient responses about their history of photosensitivity, patients were classified into one of three groups for purposes of comparison. Over half of all CLE patients included in the study reported experiencing photosensitivity, which had varying effects on quality of life. The results indicate that clinical interview questions can identify CLE patients with photosensitivity. Compliance with recommendations to avoid UV light exposure continues to be warranted in CLE patients.
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October 27, 2011
Guest Blog: Dr. Kathleen O'Neil Reflects on Her LFA Research Grant
Last year, Dr. Kathleen M. O’Neil was awarded a grant from the Lupus Foundation of America’s (LFA) Michael Jon Barlin Pediatric Lupus Research Program to study the effect of hormone changes in children and teens with lupus. Subsequently, Dr. O’Neil received an additional $328,000 from the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH). Read her blog below to learn more about her work and how the LFA’s national research program grant has supported this important study.The 2010 Lupus Foundation of America Michael Jon Barlin Pediatric Research Program grant has allowed our group of pediatric lupus investigators at 7 sites across the US and Canada to further our preliminary studies into the effects of hormone changes in puberty on lupus in children. We are investigating how hormones influence disease activity, and also how they change immune function in ways that promote lupus activity (more disease symptoms).
Systemic lupus erythematosus has long been recognized as a disease of women of child-bearing years, but why this is the case is not certain. Puberty is a natural time to study the rare children with pre-pubertal onset lupus, as they develop hormone changes one at a time, and we can document that easily with blood and urine measurements. Pediatric rheumatologists know that many girls and boys develop their first lupus symptoms around the time of puberty, but how and why this happens needs to be better understood. The observation of children with early, pre-pubertal onset SLE while they are entering into this time of complex hormone change should help us figure out which hormones cause flares, and how the immune system is affected by these changes. This can only be studied, though, using a multi-center approach, as no institution has enough children with very early onset disease who are approaching puberty at any one time.
The funding from the LFA has helped us continue studies initiated under an NIH “small grant,” making it possible to enroll more children in the study, and to continue to follow the children already enrolled. Perhaps most importantly, we have begun to enroll boys so that we can learn whether the hormone changes that affect lupus differ in boys and girls. We also hope to collect important clinical data from one of the larger groups of young children with SLE. The LFA-sponsored project has made sufficient progress to ensure that we have additional funding from the NIH to expand our research to 15 sites over the next 12 months.
July 27, 2011
Do Current Standards for Determining Lupus Kidney Flares Need Revision?
From our latest research e-newsletter:
Experts generally agree that excessive protein in the urine is a common symptom of lupus nephritis, or inflammation of the kidney. However, there is little agreement about how much of an increase in urinary protein indicates a flare. Establishing agreement on what constitutes a flare of lupus kidney disease could help identify the true status of the kidney in people with lupus. The researchers aimed to define normal fluctuations in levels of urinary protein in people with lupus kidney disease who are not experiencing a flare.
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Experts generally agree that excessive protein in the urine is a common symptom of lupus nephritis, or inflammation of the kidney. However, there is little agreement about how much of an increase in urinary protein indicates a flare. Establishing agreement on what constitutes a flare of lupus kidney disease could help identify the true status of the kidney in people with lupus. The researchers aimed to define normal fluctuations in levels of urinary protein in people with lupus kidney disease who are not experiencing a flare.
Read more >>
July 21, 2011
Donate to Support the LFA by August 26 and Your Gift Will Have Twice the Impact!
We have been given an opportunity to match your donation – dollar for dollar!
We have been challenged by a long-time supporter who has generously pledged to match all contributions up to $75,000. If we can raise $75,000 by the August 26 deadline, $150,000 will go to stimulate new areas of lupus research, education, and awareness. Please don’t miss this opportunity to double your impact and support advances that are desperately needed in lupus research.
Please give today and your gift will double if we receive it by August 26th!
P.S. As we write this, the LFA is reviewing 60 proposals from lupus researchers seeking to advance our knowledge of pediatric lupus, stem-cell transplantation, neuropsychiatric lupus (affecting the brain and nervous system), and cutaneous (skin) lupus. These proposals represent more than $5 million in research, the number of projects we will be able to fund depends on your support. Please be generous.
We have been challenged by a long-time supporter who has generously pledged to match all contributions up to $75,000. If we can raise $75,000 by the August 26 deadline, $150,000 will go to stimulate new areas of lupus research, education, and awareness. Please don’t miss this opportunity to double your impact and support advances that are desperately needed in lupus research.
Please give today and your gift will double if we receive it by August 26th!
P.S. As we write this, the LFA is reviewing 60 proposals from lupus researchers seeking to advance our knowledge of pediatric lupus, stem-cell transplantation, neuropsychiatric lupus (affecting the brain and nervous system), and cutaneous (skin) lupus. These proposals represent more than $5 million in research, the number of projects we will be able to fund depends on your support. Please be generous.
March 08, 2011
Updates from the 2010 American College of Rheumatology Annual Scientific Meeting
In November 2010, several leading lupus investigators participated in video interviews to highlight the results of their studies. These major lupus thought leaders talked about their work in lupus and what the future may hold for the search for the causes of lupus, better treatments and, ultimately, a cure for lupus. Please visit our website to watch the videos now.
January 13, 2011
Guest Blog: Why Define a Lupus Flare?
by Leslie Hanrahan, LFA Vice President of Education and Research
Ask anyone with lupus and they will tell you what a flare is to and for them. Simply put, a flare can be seen as an increase in disease activity. And because no two cases of lupus are alike, you can bet that no 2 flares are either.
When looking to conduct a clinical trial and ultimately obtain FDA approval for an investigational treatment for people with any disease, the goal is to prove that the potential treatment being studied is safe and effective and works in a population of people who resemble each other in some way (and by resemble, I mean have some form of the same signs, symptoms and experiences with their disease). In order to prove this, there must be a goal the study is working toward (a study endpoint) or a positive change that can be measured when the investigational treatment is being used.
In lupus clinical trials, stopping the onset of a flare or extending the time between two flares can be and has been identified as study endpoints. However, the absence of a very specific definition of a lupus flare has made success in lupus studies difficult. Recognizing this as a barrier, the LFA spearheaded an international effort to find a uniform definition of a lupus flare that could be used as a standard definition when designing lupus clinical trials and working with flare as an outcome measure or endpoint. In 2006 the LFA convened an international panel of experts to discuss the issue and all agreed that a single, community accepted definition for flare is required as an underpinning necessary to measure outcome in a clinical trial.
From there, the LFA led an international consensus building exercise using a scientific method to reach agreement among the lupus key opinion leaders. A definition was created and agreed upon and was pre-published in the online version of the important peer review publication LUPUS. The printed version of the article is expected in the next 2-3 months.
So what does this monumental undertaking really mean? How does this impact me? For the past fifteen years, if not more, many trials of new investigational treatments for lupus have failed to show any benefit for the individual. Why? Well, one of the problems has been the difficulty in distinguishing minor disease changes from clinical significant flares of the disease. By providing a definition for a lupus flare that distinguished itself from minor symptoms, it will be possible to design clinical trials that are more likely to show effectiveness of a treatment.
Removing this barrier is an example of another way the LFA is working to advance the science and medicine of lupus!
Learn more about the LFA-Flare
Today's guest blog comes from Leslie Hanrahan, LFA Vice President of Education and Research. She was one of the lead authors of the LFA-FLARE.
Ask anyone with lupus and they will tell you what a flare is to and for them. Simply put, a flare can be seen as an increase in disease activity. And because no two cases of lupus are alike, you can bet that no 2 flares are either.
When looking to conduct a clinical trial and ultimately obtain FDA approval for an investigational treatment for people with any disease, the goal is to prove that the potential treatment being studied is safe and effective and works in a population of people who resemble each other in some way (and by resemble, I mean have some form of the same signs, symptoms and experiences with their disease). In order to prove this, there must be a goal the study is working toward (a study endpoint) or a positive change that can be measured when the investigational treatment is being used.
In lupus clinical trials, stopping the onset of a flare or extending the time between two flares can be and has been identified as study endpoints. However, the absence of a very specific definition of a lupus flare has made success in lupus studies difficult. Recognizing this as a barrier, the LFA spearheaded an international effort to find a uniform definition of a lupus flare that could be used as a standard definition when designing lupus clinical trials and working with flare as an outcome measure or endpoint. In 2006 the LFA convened an international panel of experts to discuss the issue and all agreed that a single, community accepted definition for flare is required as an underpinning necessary to measure outcome in a clinical trial.
From there, the LFA led an international consensus building exercise using a scientific method to reach agreement among the lupus key opinion leaders. A definition was created and agreed upon and was pre-published in the online version of the important peer review publication LUPUS. The printed version of the article is expected in the next 2-3 months.
So what does this monumental undertaking really mean? How does this impact me? For the past fifteen years, if not more, many trials of new investigational treatments for lupus have failed to show any benefit for the individual. Why? Well, one of the problems has been the difficulty in distinguishing minor disease changes from clinical significant flares of the disease. By providing a definition for a lupus flare that distinguished itself from minor symptoms, it will be possible to design clinical trials that are more likely to show effectiveness of a treatment.
Removing this barrier is an example of another way the LFA is working to advance the science and medicine of lupus!
Learn more about the LFA-Flare
Today's guest blog comes from Leslie Hanrahan, LFA Vice President of Education and Research. She was one of the lead authors of the LFA-FLARE.
January 10, 2011
Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare
The Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development of Lupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.
Read more>>
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October 15, 2010
LFA Awards New Grants to Fund Critical Areas of Lupus Research
The Lupus Foundation of America addresses the gaps in understanding of pediatric lupus, neuropsychiatric lupus, lupus nephritis, and reproductive health Issues.The Lupus Foundation of America, Inc. (LFA) announced the awarding of six new research grants to address gaps in the science and understanding of key areas of lupus research, including pediatric lupus, reproductive health issues in people with lupus, lupus nephritis (kidney involvement), and neuropsychiatric lupus, which affects the brain and nervous system. Advancements in these areas of lupus research are crucial to improving a patient’s quality of life, yet remain poorly understood, and have been inadequately funded by the federal government, industry, and other organizations.
“The research funded this year tackles some of the most complex and challenging areas of lupus research,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “Issues related to reproductive health, the kidneys, and the nervous system affect so many of those living with lupus, yet these areas of research have suffered from a lack of resources, and in some cases have seen little advancement.”
Areas of study supported by Lupus Foundation of America’s (LFA) National Research Program have included epidemiology, biomarkers, cardiovascular disease, and adult stem cell transplantation. A key area of funding this year is reproductive health issues in people with lupus, which can affect both men and women. Reproductive health issues can include miscarriages, pre-term birth, and complications such as preeclampsia. There also is a need to develop programs to educate doctors and patients on issues related to the treatment of lupus during pregnancy, a better understanding of the risk factors for pregnancy-related complications and miscarriages, and the impact on the development of the fetus.
The LFA’s National Research Program is dedicated to Bringing Down the Barriers that have obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research for decades. The LFA’s National Research Program is unique because it directs LFA funding to areas of research where gaps exist in the understanding of lupus and promising areas of study in which other public and private organizations have not focused their efforts.
Using a national three-pronged strategy, the LFA and its national network are committed to advancing the science and medicine of lupus by: funding investigators through a peer-reviewed grant program; directly conducting special research initiatives; and advocating for increased investment by federal and state governments, as well as the nation's pharmaceutical and biotechnology industries. For more information about the LFA’s National Research program, visit www.lupus.org/research.
September 01, 2010
Lupus Researchers Will Examine Ways to Best Apply Findings From Lupus Mouse Model to Human Lupus
Nearly 200 lupus researchers, clinicians and representatives from government, industry, academia and nonprofit organizations involved in lupus research will gather on the campus of the National Institutes of Health to look at ways to best apply research findings from lupus mouse models to human lupus. The agenda includes presentations from twenty scientists, including discussions about new insights into lupus gained from clinical studies and animal models, advances and challenges in treating lupus, analysis of the genetics of lupus in humans and animals, and the future of lupus research and treatment.
“This meeting is bringing together researchers that are experts in mouse models of lupus and human lupus,” says Dr. Gary Gilkeson, Professor of Medicine at the Medical University of South Carolina, and Chair of the Lupus Foundation of America (LFA)’s Medical-Scientific Advisory Council. “The goal will be to review the current state of research in mouse models of lupus and how they can best be applied to human lupus in defining new biomarkers, new genes and new treatments of disease.”
This meeting on September 2-3 at the National Library of Medicine in Bethesda, Maryland is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Allergy and Infectious Diseases (NIAID), National Cancer Institute (NCI), and NIH Office of Research on Women’s Health (ORWH). The LFA assisted with meeting planning and has helped to underwrite a portion of the expenses associated with the meeting as part of its ongoing support for research to advance the science and medicine of lupus.
During this meeting participants will discuss similarities, as well as differences, seen in human disease and animal models. Organizers are also hopeful that participants may be able to develop a consensus around the most important features of lupus and what animal models might be most useful in future studies of the disease. The LFA will report additional details of the meeting in a future issue of The Lupus Research Report. If you don’t already receive LFA’s eNewsletter you can sign up for free.
Read more about the upcoming meeting.
“This meeting is bringing together researchers that are experts in mouse models of lupus and human lupus,” says Dr. Gary Gilkeson, Professor of Medicine at the Medical University of South Carolina, and Chair of the Lupus Foundation of America (LFA)’s Medical-Scientific Advisory Council. “The goal will be to review the current state of research in mouse models of lupus and how they can best be applied to human lupus in defining new biomarkers, new genes and new treatments of disease.”
This meeting on September 2-3 at the National Library of Medicine in Bethesda, Maryland is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Allergy and Infectious Diseases (NIAID), National Cancer Institute (NCI), and NIH Office of Research on Women’s Health (ORWH). The LFA assisted with meeting planning and has helped to underwrite a portion of the expenses associated with the meeting as part of its ongoing support for research to advance the science and medicine of lupus.
During this meeting participants will discuss similarities, as well as differences, seen in human disease and animal models. Organizers are also hopeful that participants may be able to develop a consensus around the most important features of lupus and what animal models might be most useful in future studies of the disease. The LFA will report additional details of the meeting in a future issue of The Lupus Research Report. If you don’t already receive LFA’s eNewsletter you can sign up for free.
Read more about the upcoming meeting.
July 19, 2010
Give Today and Your Gift Will Double
Your donation will go twice as far to find a cure and to care for people with lupus if you make your secure online gift today!
That's right: We have been given an exciting opportunity to match your donation - dollar for dollar - through August 15, 2010!
Lewis and Sara Katz, long-time LFA supporters, have generously pledged to match contributions up to $40,000. If we can raise $40,000 by the August 15 deadline, $80,000 will go to stimulate new areas of lupus research, education, and awareness. Click to give today.
You know that the need is great. People living with lupus often wait years for an accurate diagnosis, and many suffer devastating side effects from existing therapies. Advancing lupus research is the only way that we will be able to find the causes of lupus, develop more effective treatments, and get lupus under control. Your support makes a difference.
Please join our efforts by making a donation today. Remember, your gift will double if we receive it by August 15!
P.S. The LFA is currently reviewing proposals from lupus researchers seeking to advance our knowledge of pediatric lupus, lupus nephritis, reproductive health issues in people with lupus and much, much more. The number of projects we will be able to fund depends on your support. Please be generous.
That's right: We have been given an exciting opportunity to match your donation - dollar for dollar - through August 15, 2010!
Lewis and Sara Katz, long-time LFA supporters, have generously pledged to match contributions up to $40,000. If we can raise $40,000 by the August 15 deadline, $80,000 will go to stimulate new areas of lupus research, education, and awareness. Click to give today.
You know that the need is great. People living with lupus often wait years for an accurate diagnosis, and many suffer devastating side effects from existing therapies. Advancing lupus research is the only way that we will be able to find the causes of lupus, develop more effective treatments, and get lupus under control. Your support makes a difference.
Please join our efforts by making a donation today. Remember, your gift will double if we receive it by August 15!
P.S. The LFA is currently reviewing proposals from lupus researchers seeking to advance our knowledge of pediatric lupus, lupus nephritis, reproductive health issues in people with lupus and much, much more. The number of projects we will be able to fund depends on your support. Please be generous.
February 05, 2010
Watch Videos of the Latest Lupus-Related Heart Disease Research
People with lupus are at higher risk for developing heart disease than the general population. Several studies have shown that women with lupus have a 5-to-10-fold increased risk of cardiovascular disease (CVD) as compared to women who don't have lupus. In addition, African American women are three times more likely to develop lupus than Caucasian women which increases their risk of developing lupus-related CVD.
The Lupus Foundation of America (LFA) has committed significant funds to a vital and innovative research program addressing this often serious and potentially fatal consequence of lupus.
In addition to supporting this research effort, LFA has also created three videos in which doctors talk about their research, and the importance of learning more about lupus-related CVD.
In the first video, Dr. Naveed Sattar of the University of Glasgow provides some insight as to why people with lupus are at greater risk for cardiovascular disease. Dr. Sattar moderated a session at the 2009 American College of Rheumatology (ACR) Annual Scientific Meeting on this topic.
In the other videos, two LFA-supported investigators -- Dr. James C. Oates and Dr. Betty P. Tsao -- provide a brief overview of their studies.
Watch videos of the latest lupus-related heart disease research.
The Lupus Foundation of America (LFA) has committed significant funds to a vital and innovative research program addressing this often serious and potentially fatal consequence of lupus.
In addition to supporting this research effort, LFA has also created three videos in which doctors talk about their research, and the importance of learning more about lupus-related CVD.
In the first video, Dr. Naveed Sattar of the University of Glasgow provides some insight as to why people with lupus are at greater risk for cardiovascular disease. Dr. Sattar moderated a session at the 2009 American College of Rheumatology (ACR) Annual Scientific Meeting on this topic.
In the other videos, two LFA-supported investigators -- Dr. James C. Oates and Dr. Betty P. Tsao -- provide a brief overview of their studies.
Watch videos of the latest lupus-related heart disease research.
January 06, 2010
Lupus Foundation of America Awards New Research Funding to Address Issues Critical to Lupus Patients
Research areas include management of the disease in children and teens, improving health outcomes, underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus
The Lupus Foundation of America, Inc. (LFA) announced new funding for research grants to address issues of critical importance for people with lupus, including the management of the disease in children and teens, improving health outcomes, the underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus, and the development of new, safe, and effective treatments. In addition, the LFA awarded five student fellowships to foster an interest in lupus research, and renewed funding for the Lupus Biomarkers Clinical Consortium, a collaborative initiative that seeks to identify biomarkers that hold promise to facilitate the diagnosis and treatment of lupus.
The LFA National Research Program, Bringing Down the Barriers, is unique because it not only funds basic and clinical research, but also focuses on areas that have been inadequately funded by the federal government, industry, or other organizations. The LFA is the only national organization to focus on pediatric research through its Michael Jon Barlin Pediatric Research Program, which was established with the generous support of the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who passed away in 2006 at the age of 24 following a long battle with lupus. Other areas of study currently or previously supported by the LFA’s National Research Program include epidemiology, cardiovascular disease, novel pilot approaches, and adult stem cell transplantation.
“More than ever before, this year’s research studies funded through LFA’s National Research Program hold the potential to have an immediate and direct impact on patients and their quality of life,” said Sandra C. Raymond, LFA President and CEO. “For example, the LFA is funding the development of a tool that seeks to ultimately improve the self-management skills of children with lupus, which will aid in their transition to adults, and lead to overall better management of the disease.”
Read the list of the 2010 LFA National Research Program Awards.
The Lupus Foundation of America, Inc. (LFA) announced new funding for research grants to address issues of critical importance for people with lupus, including the management of the disease in children and teens, improving health outcomes, the underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus, and the development of new, safe, and effective treatments. In addition, the LFA awarded five student fellowships to foster an interest in lupus research, and renewed funding for the Lupus Biomarkers Clinical Consortium, a collaborative initiative that seeks to identify biomarkers that hold promise to facilitate the diagnosis and treatment of lupus.
The LFA National Research Program, Bringing Down the Barriers, is unique because it not only funds basic and clinical research, but also focuses on areas that have been inadequately funded by the federal government, industry, or other organizations. The LFA is the only national organization to focus on pediatric research through its Michael Jon Barlin Pediatric Research Program, which was established with the generous support of the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who passed away in 2006 at the age of 24 following a long battle with lupus. Other areas of study currently or previously supported by the LFA’s National Research Program include epidemiology, cardiovascular disease, novel pilot approaches, and adult stem cell transplantation.
“More than ever before, this year’s research studies funded through LFA’s National Research Program hold the potential to have an immediate and direct impact on patients and their quality of life,” said Sandra C. Raymond, LFA President and CEO. “For example, the LFA is funding the development of a tool that seeks to ultimately improve the self-management skills of children with lupus, which will aid in their transition to adults, and lead to overall better management of the disease.”
Read the list of the 2010 LFA National Research Program Awards.
December 07, 2009
Watch the LFA's Latest Video Series on Lupus Research
At the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, more than 20 key lupus researchers and scientists sat down with LFA officials to talk about the research data they presented. Those on-camera interviews, and a summary of selected research abstracts, are now available.
Topics covered include: Treatments for Lupus, Complications of Lupus, and Causes of and Progression of Lupus.
Watch videos of the latest lupus research.
Topics covered include: Treatments for Lupus, Complications of Lupus, and Causes of and Progression of Lupus.
Watch videos of the latest lupus research.
November 30, 2009
Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research
Proceeds from the song, “LUCY,” will be donated to the Lupus Foundation of America and the St. Thomas Lupus Trust
Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.
Sandra C. Raymond, LFA President and CEO, issued the following statement:
"We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.
"We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.
"Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.
"Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009."
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Julian Lennon, decade later, back in music biz with 'Lucy'
Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.
Sandra C. Raymond, LFA President and CEO, issued the following statement:
"We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.
"We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.
"Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.
"Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009."
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Julian Lennon, decade later, back in music biz with 'Lucy'
November 19, 2009
LFA Releases Video Series on the Latest Lupus Research
The Lupus Foundation of America (LFA) joined more than 11,000 rheumatologists and allied health professionals at the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, Pennsylvania in mid-October. The program included more than 260 abstracts, plenary or special session presentations specifically about lupus.
Representatives of the LFA attended the meeting to report on new developments in basic, clinical, translational, and epidemiological research on lupus. More than 20 key lupus researchers and scientists sat down with LFA officials to talk about the research data they presented. Those on-camera interviews, and a summary of selected research abstracts, are now available to view.
Topics covered are:
Representatives of the LFA attended the meeting to report on new developments in basic, clinical, translational, and epidemiological research on lupus. More than 20 key lupus researchers and scientists sat down with LFA officials to talk about the research data they presented. Those on-camera interviews, and a summary of selected research abstracts, are now available to view.
Topics covered are:
- About the ACR Annual Scientific Meeting
- Treatments for Lupus
- Complications of Lupus
- Management of Lupus
- Causes of and Progression of Lupus
- Pregnancy and Lupus
October 05, 2009
National Report Shines Light on Lupus 50-Year Treatment Drought
Today, The Lewin Group, a national health care consulting firm, issued recommendations on ways to overcome the barriers that have obstructed lupus drug development resulting in no new drug approval for this disease in more than 50 years -- since the Eisenhower Administration. The recommendations are included in the report Overcoming Barriers to Drug Development in Lupus, which is the outcome of a 9-month study commissioned by the Lupus Foundation of America, Inc. (LFA). The recommendations highlight the need for a national collaborative and coordinated effort among key stakeholders, including the FDA, the National Institutes of Health (NIH), researchers and scientists from academia, the LFA, and industry, to implement a range of initiatives that would create a path forward to develop a robust arsenal of safe, effective, and more tolerable treatments for this difficult to treat and devastating disease.
The report provides recommendations for each of the key stakeholders, which include expanding federal support for medical research on lupus, assessing the existing standard of care used in clinical trials, examining the interpretation of regulations pertaining to clinical trial design and related standards of evidence used to evaluate investigational drugs for lupus, expediting the discovery and validation of lupus biomarkers, and more.
Read the entire press release here.
The report provides recommendations for each of the key stakeholders, which include expanding federal support for medical research on lupus, assessing the existing standard of care used in clinical trials, examining the interpretation of regulations pertaining to clinical trial design and related standards of evidence used to evaluate investigational drugs for lupus, expediting the discovery and validation of lupus biomarkers, and more.
Read the entire press release here.
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