Road to a Lupus Cure

Jenny's Notebook: Directions and Destinations

noreply@blogger.com (Sophie - LFA) — Fri, 27 Jan 2012 19:40:00 +0000

Jenny's Notebook is back and better than ever for 2012! Check our her latest post about taking control and managing her lupus to live the best life possible, despite its challenges.

How truthful are you about the way you manage your lupus? I’m going to ask you a few questions; let’s see how you do—and be honest.

Have you ever skipped taking your meds? Once or twice? For a week? For longer?

Have you ever spent the whole day in the sun without any sunblock or sun-protective clothing?

Have you ever insisted on working late every night for weeks on end because no one else could possibly finish that project but you?

Truth is…
Did you answer “Yes’, to any of these? If so, you’re not alone. I confess that I’m guilty of each and every one.

And if your doctor asked you those same questions, how would you answer?

You might first deny everything—that will work until the lab test results come in. You might admit to one or two, like no sunblock, or a few extra hours on the job—you’d probably get away with that for awhile.

But you should know that anyone with lupus answering ‘yes’ to questions like these has just become the doctor’s worst nightmare: the noncompliant patient.

Every doctor dreads this patient because those noncompliant actions have consequences. Maybe it was a mild flare that knocked us off our feet for a few days and disrupted our plans. But maybe it was a severe flare—one that put us in the hospital for a few weeks and scared our loved ones half to death.

An article in the Fall 2008 issue of Lupus Now discussed why people are non-compliant with their prescribed medicines: adverse side effects, medication costs, inadequate insurance coverage. Research shows that clinical depression can also cause noncompliance. Forgetfulness, too, plays a role, maybe due to lupus “fog,” maybe because of internal disobedience—in other words: denial.

We’re only human
It’s human nature, I think, to want to go back to how we used to be—our former self, “LBL: Life Before Lupus.”

In our beautiful Life Before Lupus, we could do anything we wanted. We had plans for recreation, for work, for family. We had dreams and goals. Being sick had no place in this life. And having a disease that would require our attention forever? The possibility simply never occurred to most of us.

Then lupus happened. And that beautiful life became “LWL: Life With Lupus.”

If we’re not careful, that dream—the yearning for Life Before Lupus, can turn into a nightmare. By disrupting our doctors’ efforts to keep our lupus under control, we become our own enemy. We countermand our own best chance of getting better.

It’s taken some 18 years, but I’ve come to see that following all my doctors’ directions is like following a road map. I no longer view my Life With Lupus as a dark and dangerous journey. Instead I understand that my true destination is to live the best life possible, despite the many challenges of lupus.

And when I get lost, or have a flat tire, or the car hood falls on my head (good thing I have a thick skull!), that’s when I call on my personal road crew for support: family, friends, co-workers, boyfriend, and yes—my doctors.

So today I pledge to take my pills, remember the sunblock, forgive the doctor for making me wait, and smile at the lab tech drawing my blood. Because no matter how many wrong turns I have taken, I want my trip to last a long time!

Won’t you join me?

I remain,
Your faithful correspondent and traveler,
Jenny

Lupus Foundation of America Expands Education Series for 2012

noreply@blogger.com (Sophie - LFA) — Thu, 19 Jan 2012 18:00:00 +0000

The Lupus Foundation of America (LFA) has announced its 2012 topics and dates for its nationwide education series, Lupus: Learn from the Experts,™ designed to provide people with lupus essential information about living with lupus from some of the world’s leading experts. The program is a series of webinars hosted by a variety of experts that will cover a wide-array of issues important to people with lupus including, pediatric lupus, diet and nutrition, pregnancy and lupus, skin lupus, treatments for lupus, among others. This year the number of webinars has been expanded and includes two that will be offered in Spanish.

To learn more, please visit www.lupus.org/learn

Lupus Research Report: Reduced Growth and Delayed Puberty in Children with Lupus

noreply@blogger.com (Sophie - LFA) — Thu, 12 Jan 2012 19:28:00 +0000

From our latest Lupus Research e-newsletter

Children with lupus often face unique challenges because their disease can be more severe and may require more aggressive treatments. Lupus or its treatments may have lasting biological effects. However, little is known about growth and development in children with lupus. The researchers examined possible impairments in growth, such as height, among children with lupus of varying ages and also depending on how long they have had lupus. Possible effects of steroid treatments on height were also specifically examined.

Read more>>

Changes to Lighting in your Home

noreply@blogger.com (Sophie - LFA) — Thu, 05 Jan 2012 20:07:00 +0000

A change is coming to the light bulbs you will find for sale in the United States. Current incandescent light bulbs do not meet the energy efficiency standards and as a result, the phase out of general service incandescent light bulbs began January 1, 2012. The larger lighting manufacturers have developed three core types of light bulbs: Compact Fluorescent Light, Halogen, and Light-emitting Diode (LED). However, anecdotally, many people with lupus have reported more adverse reactions or flares when exposed to fluorescent lighting.

Learn more about how this lighting change may affect you and others with lupus.

Because the halogen and LED bulbs are newer technologies, we have yet to determine how they will affect people with lupus. We would like to hear from you to find out how halogen and LED bulbs may affect people with lupus. If you try these new bulbs in your home, please email advocacy@lupus.org to share whether or not they have any effect on you.

Make Your Year-End Gift to the LFA Today

noreply@blogger.com (Sophie - LFA) — Thu, 15 Dec 2011 16:57:00 +0000

As we come to the end of 2011, we reflect back on all the progress we’ve made this year. Your support enabled the Lupus Foundation of America (LFA) to increase awareness about lupus, generate greater investments in lupus research, and stimulate the development of new, safe, and more effective treatments. Together, we have made great progress. But there is still much more work that needs to be done.

This year, three long-time LFA supporters generously pledged to the LFA a total of $100,000 — enough to fund a lupus research project for a year, like Dr. Vikki Abraham’s study on lupus and pregnancy.

"Our studies are moving towards the goal of working out better ways of predicting pregnancy complications, and better ways of treating them. Without the initial funding from the LFA, we never would have been able to accomplish this."

Vikki M. Abrahams, Ph.D.

Yale University School of Medicine

I am reaching out today to ask you and all LFA supporters to band together and match their generosity through our 2011 Year-End Giving Campaign.

Please consider making your generous 2011 Year-End Contribution to the LFA by December 31, 2011 to help reach our goal and support even more life-saving research initiatives in 2012.

Thank you for your support, and we look forward to another year of progress in 2012.

Sincerely,

Sandra C. Raymond
President and CEO
Lupus Foundation of America, Inc.

15 Questions with Jana Eshaghian – Dealing with the Stress of Being a Parent with Lupus

noreply@blogger.com (Sophie - LFA) — Thu, 01 Dec 2011 17:45:00 +0000

A parent with lupus adds challenges to the already heavy demands of being a parent. Small adjustments to your lifestyle can help minimize disruptions in your children’s daily schedule and activities. You will be able to devote more quality time to your children when you receive more rest and reduce stress. This month, Jana Eshaghian will respond to questions regarding ways to address the stress of being a parent with lupus.

Submit your questions to Ms. Eshaghian by December 7. If you have a question about lupus that is not associated with this month’s topic, we invite you to submit your inquiry to our LFA Health Educators and your question will be answered as soon as possible.

Learn more about 15 questions

Review transcripts from our previous 15 Questions and Web Chats

Long-Term Impairments of Functioning in Obese Women with Lupus

noreply@blogger.com (Sophie - LFA) — Mon, 28 Nov 2011 16:26:00 +0000

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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Guest Blog: ‘Tis the season to dine at someone else’s table

noreply@blogger.com (Sophie - LFA) — Tue, 15 Nov 2011 18:52:00 +0000

Today's guest blog comes from Jessica Goldman, aka Sodium Girl. We were thrilled to feature her in the Fall 2011 issue of Lupus Now Magazine and even more excited to hear from Jessica herself for a guest blog. Last holiday season, she shared with us some delicious Thanksgiving recipes and this year, she will guide our readers on getting through the challenges of being a guest with a dietary restriction during the holidays. Enjoy and check out her blog at www.sodiumgirl.com.

Over the next few weeks, family and friends will welcome us into their homes, opening up their refrigerators, ovens, and china cabinets for our entertainment and pleasure. We will be treated to succulent feasts, potlucks, and too many pies to count. And besides the food itself, sharing these treats with those we love is what the holidays are all about.

But as someone with food restrictions, keeping to one’s diet while remaining a gracious guest can feel trickier than trussing a turkey - if you don’t have the right moves!

Without ever having to impose on the host or hostess, it is easy to participate in all the culinary holiday fun while keeping your low-sodium diet. But before we even get to the low-sodium solutions, remember this: people want their guests to be happy and full. So if Aunt Janie or friend Sal found you nibbling on the edible table arrangements to stave off starvation, they would be horrified that they had not provided anything for you to eat. Sharing is caring. So here are some ways to let your host or hostess provide for you, without asking too much of their time, money, or catering bill.

Option 1: Full-Disclosure
Chances are your relatives and besties will already know about your food needs and they’ll most likely want to try their hand at making a few salt-free treats for you. So when you RSVP for the event, ask if you can send a recipe or two for easy, salt-free appetizers--like a bean dip--or if they want to make you a full meal, pass along a list of your needs so that they know exactly what ingredients to use and, of course, those to avoid.

Option 2: Helping Hand
Avoid asking the busy host or hostess to make a special meal for you and offer to bring a few low-sodium treats with you. Easily transportable appetizers --like jicama fries, salt-free bruschettas, or bite-sized beef tenderloin bites--will not only fill you up but will taste equally delicious to others.

Option 3: Edible Gifts
If you don’t know the host or hostess that well, one way to ensure yourself some salt-free food without ever really having to bring up the topic is to bring a salt-free food present. A can of salt-free popcorn, salt-free pickles, or salt-free pasta pretzel sticks will look too good (and perishable) to put in the cupboard. And with these edible gifts as part of the spread, you will be guaranteed something low-sodium to nibble on.

Option 4: Secret Stash
Last but not least, you can always pack a snack pack. Bring a small bag full of individual portions of traditional holiday foods, and that way, if the host or hostess suddenly realizes you have nothing to eat (gasp!), they’ll be happy to know you came prepared. Throw your food on a plate and be served with everyone else.

No matter which tactic you choose to take, remember that these are your family and friends (and maybe coworkers, too). They love you. They love seeing you eat. And the more you share with them about your diet--with enthusiasm, of course--the more they will learn about what you need. And who knows...next year there may be a whole low-sodium cornucopia waiting for you.

For more tips on making sure the Turkey and other traditional holiday dishes stay tasty and salt-free, check out Jessica’s holiday tips from last year!

Lupus Research Report: Genetic Profiling Can Predict Some Lupus Manifestations

noreply@blogger.com (Sophie - LFA) — Fri, 11 Nov 2011 17:52:00 +0000

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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Updates from ACR 2011 - Prevalence of lupus, clinical trials, and more

noreply@blogger.com (Sophie - LFA) — Tue, 08 Nov 2011 20:31:00 +0000

It's day 4 of the American College of Rheumatology's Annual Scientific Meeting in Chicago! There is no stopping Dario and Jenny as they bring us the latest in lupus research and updates. There have been many exciting announcements including results from a LFA initiative studying the effect of background medication in clinical trials for lupus treatments, which may provide needed insight on patient response and help create pathways forward for the development of new treatments.

In addition, Dr. S. Sam Lim from Emory University School of Medicine will present in a new study this afternoon regarding the number of people with lupus in the United States. The data indicates that overall prevalence of lupus in this population is higher than seen in previous studies, suggesting longer survival and/or more frequent diagnosis of lupus. According to Dr. Lim, lupus continues to affect significant numbers of people across racial and ethnic lines, but with a disproportionate burden on black women. Results from this study provide additional and more accurate evidence that lupus is a significant and complex disease. You can read more about it here and follow along with us on Twitter as we live-tweet the session.

Hope you all are enjoying the updates. Let us know if you have any questions and I will be sure to pass them on to our team in Chicago!

New Study Sheds Light on the Challenges of Developing Lupus Treatments

noreply@blogger.com (Sophie - LFA) — Mon, 07 Nov 2011 17:04:00 +0000

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

Pediatric Lupus

noreply@blogger.com (Sophie - LFA) — Fri, 04 Nov 2011 11:00:00 +0000

While lupus most often affects women in their childbearing years, it can occur in either gender at any age, including children and teens. Lupus in children is the same disease as lupus in adults; however, children diagnosed with lupus often have been ill for a longer period before the diagnosis is made. As a result children with lupus often are required to begin aggressive therapy soon after diagnosis.

Learn more about lupus in children and lupus and teens.

Read Dr. Norman Ilowite’s answers to your questions about pediatric lupus

Child’s Play: Active attitudes for young people with lupus

LUPUS AT A YOUNG AGE: A child’s needs and concerns are different and the same

Lupus Research Summaries: Pediatric Lupus

Follow Us at ACR 2011!

noreply@blogger.com (Sophie - LFA) — Thu, 03 Nov 2011 18:21:00 +0000

The Windy City in November? When faced with this trip to the huge annual event known ’round the world (really!) as “ACR,” naturally the first thought in my head is: What clothes should I pack??!

The occasion is the five-day scientific meeting of the American College of Rheumatology/ Association of Rheumatology Health Professionals (ACR/ARHP), with the opening reception at the Museum of Natural History on Saturday November 5, and the final sessions on Wednesday, November 9. Several people from the LFA national office will be going because of LFA board and committee meetings, award presentations, industry luncheon, and so forth.

But for me and my colleague, Dario (that’s Dario Dieguez, Jr., Ph.D., our Research Program Manager and All-Round Fun Person on a Trip—ask him sometime about the pickpocket incident on our train ride from DC to Philly) ,it’s all about the research. In fact, I think we have the best assignments: attend the scientific sessions and research presentations, summarize the information for LFA publications, renew friendships with the world’s foremost rheumatology clinicians and scientists, and make new contacts in the lupus field. So far, 2011 has been a historic year in the field of lupus, with the approval of the first drug ever developed specifically to treat the disease, and we expect additional exciting lupus research announcements will be made during the meeting. We’ll also be providing updates on the results of LFA-funded research studies.

We hope you will follow along on LFA’s Facebook Page and Twitter as we bring you the very latest news in lupus science and patient care. And after the meeting, come back to the LFA Web site, lupus.org, for audio podcasts with leading lupus researchers and other thought leaders in the field.

Now about that packing…

Regular readers of “Jenny’s Notebook” may recall that my last journey to Chicago was in August, for the Lupus Initiative meeting, and an especially mild weekend it was. Before that was Miami for the pediatric rheumatology meetings—you all remember the turquoise-and-white ensemble situation. And although I had believed that snow is not likely in Illinois in November, the recent day-before-Halloween snowstorm has blown that assurance sky-high! In other words, ’tis not the season or occasion for sandals and summer dresses. No. Things have to be businesslike. Two-piece suits. Shoes with heels. Stockings. And matching colors. Things need to match… Dario, I hear you laughing! Just you wait ’til I make you tote my bags….

See you in Chicago!

Self-Reported Effects of Cutaneous Lupus on Quality of Life

noreply@blogger.com (Sophie - LFA) — Tue, 01 Nov 2011 11:00:00 +0000

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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Lupus and Dental Health

noreply@blogger.com (Sophie - LFA) — Mon, 31 Oct 2011 11:00:00 +0000

Approximately 95% of lupus patients suffer from some form of oral involvement. Disregarding the importance of proper dental care can be a painful and costly error that in some cases may actually be dangerous. Learn more about managing your dental health while living with lupus.

Lupus Guide to Dental Care (pdf)

Mouth Maintenance: Fight Tooth Decay and Gum Disease with Proper Dental Upkeep

Oral Issues with Lupus

Guest Blog: Dr. Kathleen O'Neil Reflects on Her LFA Research Grant

noreply@blogger.com (Sophie - LFA) — Thu, 27 Oct 2011 20:11:00 +0000

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.

Lupus: Learn from the Experts - Parents Caring for Children with Lupus

noreply@blogger.com (Sophie - LFA) — Thu, 27 Oct 2011 16:26:00 +0000

Lupus: Learn from the Experts is an education series from the Lupus Foundation of America, Inc. The program consists of free educational telephone conference calls on a variety of topics designed to provide you with important information about living with lupus. Don’t miss the opportunity to learn from some of the world’s leading lupus experts from the comfort and privacy of your home.

Upcoming Program: Parents Caring for Children with Lupus
Saturday, November 19, 2011 1pm-2pm EST
Presenter: Emily von Scheven, MD
To register for the Parents Caring for Children with Lupus Teleconference, click here.

To listen to previous programs or to download other programs, please visit www.lupus.org/learn.

Tell your story: hair loss, music therapy, and lupus and lungs

noreply@blogger.com (Sophie - LFA) — Fri, 21 Oct 2011 17:51:00 +0000

Planning for the Spring 2012 issue of Lupus Now magazine is underway, and we need your help! Topics will include how to cope with hair loss, the healing power of music, and the effects of lupus on the lungs.

If you have experienced hair loss due to lupus or lupus medications, we would like to hear from you. We also are seeking hairdressers familiar with this effect of lupus, so if your hairdresser has some innovative ways to help with hair loss, let us know! Send your name, contact information, the contact information for your hairdresser (with his or her permission), and a few lines about your lupus hair loss to lupusnow@lupus.org, with “Hair” in the subject line.

Have you ever used music therapy for lupus-related symptoms and/or stress relief? If you have, we want to hear from you. Please send your name, contact information, and a few lines about how you have used music as a therapy to lupusnow@lupus.org, with “Music” in the subject line.

If you have experienced inflammation within your lungs (pneumonitis) or of the lining around your lungs (pleuritis), or any other pulmonary complications of lupus, we would like to hear from you. Please send your name, contact information, and a few lines about your lupus to lupusnow@lupus.org, with “Lungs” in the subject line.

15 Questions with Dr. Emily von Scheven - Transitioning from pediatric to adult care

noreply@blogger.com (Sophie - LFA) — Mon, 17 Oct 2011 18:24:00 +0000

For a young adult with lupus, transitioning from their pediatrician's care to an adult care setting can be an especially challenging time. Dr. Emily von Scheven will address questions from young adults and their parents and provide strategies on how to best maintain a continuity of care during the transitional period.

Submit your questions to Dr. von Scheven.

Please note: If you have a question about lupus that is not associated with this month’s topic, we invite you to submit your inquiry to our LFA Health Educators and your question will be answered as soon as possible.

Your Voice Is Needed - Future Development of New Lupus Drugs at Risk

noreply@blogger.com (Sophie - LFA) — Fri, 14 Oct 2011 15:41:00 +0000

As many of you know, Benlysta® is the first treatment developed specifically for lupus since the disease was identified in the mid-1800's. This treatment represents a ray of hope that new safe, effective and tolerable treatments can be developed for the more than five million people around the world living with lupus.

The United Kingdom's (UK) National Institute for Health and Clinical Excellence (NICE) recently released its preliminary recommendation to NOT cover the cost of Benlysta® through the National Health Service.Their preliminary recommendation could have a devastating international impact on the survival of this important new treatment, and it may have a chilling effect on the future development of new lupus drugs thereby denying physicians and patients appropriate treatment options.

Join us in our call to action by urging NICE to recommend that the United Kingdom's National Health Service provide coverage of Benlysta® by October 20.

Video Game Can Reduce Fatigue in African-American Women With Lupus

noreply@blogger.com (Sophie - LFA) — Tue, 11 Oct 2011 15:00:00 +0000

From our latest research e-newsletter
Many people with lupus experience fatigue, which can disrupt normal daily activities. This fatigue is not necessarily due to use of medications for lupus or to inflammation. Much research indicates that appropriate exercise can be one of the most effective strategies to reduce fatigue. Wii Fit is an interactive video game system that connects to a television and allows users to participate in a variety of guided exercises. The researchers hoped to learn the effects of a 10-week, home-based exercise program, Wii Fit, on fatigue, emotional state, sleep, and pain in African-American women with lupus. This pilot study illustrates that a home-based Wii Fit exercise program is safe for use in people with lupus, and is adhered to fairly well. People with lupus should always consult a physician before beginning any regular exercise program.
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Lupus Now Magazine: Fall 2011 Preview

noreply@blogger.com (Sophie - LFA) — Fri, 07 Oct 2011 15:59:00 +0000

The fall issue of Lupus Now will be mailing soon! Check out our editor-in-chief's preview of the issue and if you're not a subscriber, please visit www.lupusnow.org to sign up.

If you move often because of your or your spouse’s job, or because of military reassignments, you will need to plan ahead for your medical needs in a new location. Our “Big Move” Wellness article gives tips on how to make this process easier.

It’s crucial for your lupus health care providers to communicate with one another—and with you. In “Connect the Dots,” a variety of lupus specialists share their thoughts on the importance of coordinated health care.

In a comprehensive wellness program, nutrition plays a key role. We are so impressed with one young woman, Jessica Goldman, who has a nickname that defines her own personal journey with lupus. Find out how her decisions to change her diet have touched many others, in our cover story.

Children with lupus tend to miss a lot of school. And every day they miss puts them at risk for falling behind the rest of the class. Our feature on Individualized Education Plans and 504 Plans explains how these two important programs can assure that children with lupus achieve their educational goals.

In “Helping Hands” we interviewed four remarkable individuals who share the ups and downs of being a caregiver. Whether you care for a parent, child, or spouse with lupus, we have information you’ll want to know.

Does the cold weather make you want to hibernate? Rejuvenate instead, with our “Out of Hibernation” tips for staying active in the winter season.

The LFA’s national research grant program has announced the recipients of the 2011-2012 program. Read about the recipients and their projects in Foundation News.

New Experimental Molecule Neutralizes Lupus Autoantibodies

noreply@blogger.com (Sophie - LFA) — Wed, 05 Oct 2011 18:01:00 +0000

From our latest research e-newsletter
Humans and animals with lupus produce autoantibodies that can cause inflammation, as well as damage cells and organs of one’s own body. In particular, antibodies to double-stranded DNA contribute to organ damage. Researchers have long investigated the possibility of blocking the actions of lupus-related autoantibodies to reduce the extent of such damage. Typically, such research is first tested in animals to ensure efficacy and safety before being conducted in humans. Researchers at The Feinstein Institute for Medical Research have created a new experimental molecule to test its ability to inhibit lupus-related autoantibody attachment to ds-DNA isolated from mice, as well as to components of kidneys extracted from mice, and to living brain cells of mice. The results of these studies provide hope for the development of more specific, less toxic therapies for lupus. However, more animal research is needed before this molecule can be tested in living humans with lupus.

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Lupus Foundation of America Congratulates the 2011 Nobel Prize in Medicine Recipients for Immune System Discoveries

noreply@blogger.com (Sophie - LFA) — Mon, 03 Oct 2011 18:53:00 +0000

The Lupus Foundation of America (LFA) congratulates Bruce A. Beutle, Jules A. Hoffmann, and Ralph M. Steinman for receiving the 2011 Nobel Prize in Medicine for their revolutionary discoveries of the immune system that have contributed to key advances in the understanding of and treatments for autoimmune diseases, such as lupus.

Read more>>

Advances in Lupus Research: Spotlight on Treatment Live Webinar

noreply@blogger.com (Sophie - LFA) — Wed, 28 Sep 2011 18:58:00 +0000

Advances in Lupus Research: Spotlight on Treatment Live Webinar
Wednesday, October 26, 2011
5:30-6:30 p.m. Eastern Time

We invite you to join Dr. Susan Manzi from Allegheny General Hospital as she leads a discussion with Dr. Michael Lockshin and Dr. Jane Salmon from Hospital for Special Surgery on the state of lupus research and new lupus treatments.

The Advances in Lupus Research: Spotlight on Treatments live webinar with live audience event is free and open to all. This LFA event is held at Hospital for Special Surgery located in New York City.

If you live or will be in the New York area on October 26, we invite you to join the studio audience for the event being held at Hospital for Special Surgery (note: studio audience space is limited).

Please visit www.lupus.org/event to register for the free event.