Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, December 10, at 3 p.m. Eastern Time. The LFA welcomes Dr. Al Herzog, who will serve as the guest expert for the Depression & Lupus chat. Dr. Herzog is a Professor of Clinical Psychiatry at the University of Connecticut School of Medicine. He has written on a wide variety of medical topics ranging from psychiatry to organized medicine and to the application of complexity science to the practice of medicine. He received his medical training at the University of Pennsylvania, was a resident in Internal Medicine at Hartford Hospital and received his psychiatry training at Yale. He is Board Certified in Psychiatry and is a Distinguished Fellow in the APA as well as the Society for Clinical and Experimental Hypnosis.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

This came across my desk recently and I wanted to share it with you. A few years ago, Jerry Norton retired from the Air Force after 22 years. To stay active, he took up running. He really enjoyed it, and then decided to take on his first marathon, which he did for charity.

Then Jerry decided to challenge himself further … in 2007 he volunteered at the Las Vegas Silverman triathlon, which is a 1.2 mile open water swim, 56 mile bike ride and a 1/2 marathon. A total of 70.3 miles. After volunteering, he decided that he could do that and immediately signed up for the 2008 event, even though he’d never done a triathlon in his life. Jerry didn't even have a bike, and he hadn't swam in 25 years. Jerry knew an undertaking that big needed an equally big motivator to keep him from coming up with excuses to quit. His wife had recently been diagnosed with lupus after about a year of misdiagnosis from numerous doctors. That's when he made the decision to do the triathlon for lupus. “I know what she's been going through. There was no way I was not going to finish the event, knowing I was doing it for a good cause,” said Jerry. “It seems most people are totally unaware of lupus. I found myself … answering questions and raising awareness about lupus.” He continued “I even had a flier for a Walk for Lupus Now event put on by the Lupus Foundation of America. I made some calls, sent some emails and set up a fund-raising goal of $3,000.” After hundreds of miles of training (swimming, biking & running), the day of the event finally arrived. Thunderstorms delayed the start of the swim for 1 hour. The bike ride was windy, rainy and hilly. Then the final leg -- the run -- was another brutal element. It was the toughest thing Jerry had ever done but “it was worth every ounce of sweat to see my wife and my friends at the finish line, supporting me and the Lupus Foundation of America.” He added “several friends were there, representing families who had lupus. They couldn't thank me enough for helping the cause. My goal of $3000 was accomplished, even with our country’s tough economic times. I still wish I could have done more. There's always next year!”

The Lupus Foundation of America (LFA) brings increased attention to the need for safer, tolerable and effective lupus treatments through its Zero in 50 campaign. Thursday, November 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. Today, there is great cause for optimism. There are more lupus researchers and pioneers in biotech and pharmaceutical companies than ever before working to develop new treatment for lupus. We believe through continued partnerships on all fronts we can accelerate the pace of discovery and ultimately end the suffering caused by lupus. The LFA is on the front lines of this effort to advance the science and medicine of lupus and to bring down barriers that have impeded progress in lupus research. Read more about this new campaign, read stories from people living with lupus and what 50 years without a new lupus drug means to them, and learn how you can take action.

Good morning everyone: Sorry all was silent last week. I was out of town on business travel and was unable to post anything. I have a lupus blog I'd like to share with you. It is called Lupus Ranting. It's written by a woman -- Sue -- who lives in Missouri. Here's a little bit about Sue ... in her own words. "I was diagnosed with systemic lupus (SLE) in 1992. I also have subacute cutaneous lupus (SCLE). Autoimmune disorders are frustrating and vexing. If you have one (or more) you understand what it’s like. If you don’t and decide to read this blog on a regular basis, you’ll eventually learn something. I’m not sure exactly what but hey, this is a blog after all. I consider myself lucky. I have a full-time job, health insurance, an understanding employer, supportive family and friends, an amazing son. I created this blog to write about life, friends, family, lupus and an array of stuff." If you have some time, swing by Lupus Ranting and say hi to Sue. What does 50 years without a new lupus drug mean to you? The LFA is still looking for your thoughts on what 50 years without a new lupus drug means to you. To learn more about this campaign, and to take part in it, visit Zero in 50. That's your lupus scoop for today. Until next time, Wick

Thanks to everyone who attended the "Healthy Eating & Weight Management & Lupus" webchat hosted by Dr. Laura Coleman on Wednesday. It went really well. A copy of that chat transcript has now been posted online. And, we hope you will join us for the December 10, 2008 webchat. The topic is "Depression & Lupus," and it's hosted by Dr. Al Herzog. Mark your calendars for that.

Most people with lupus are able to be vaccinated against a variety of disease with no problems. However, because the immune system of people with lupus may be weakened, they should always talk with their doctor before receiving any vaccine. Flu Shots and Lupus Patients Although some vaccines can make autoimmune diseases worse, use of the influenza vaccine (flu shot) appears to be safe in people with systemic lupus erythematosus (SLE). Because the flu shot is an inactivated virus vaccine (not a live virus vaccine), it can be given safely and it is recommended that lupus patients receive a flu shot every year. Please be aware that the Centers for Disease Control and Prevention (CDC) does not recommend the product "FluMist" for persons with compromised immune system disorders. Moreover, family members should not use this product if they are in contact with an individual with lupus. Lupus patients should always talk with their doctors before receiving any vaccine. The influenza vaccine (flu shot) is a highly effective inactivated virus vaccine that is given yearly to those at risk for complications of influenza infection. Several studies conducted in people with lupus who received the influenza vaccine found a protective antibody response, although the antibody levels tended to be lower than in the healthy control group. Side effects were not more frequent and disease flares were not more common. When present, the flares were usually mild. One person did develop diffuse proliferative glomerulonephritis (a class of kidney disease) following immunization received during a lupus flare; therefore, some researchers do not recommend vaccination during flares. Overall, though, influenza vaccine is considered to be safe and effective in people with lupus. Invasive pneumococcal infections occur more frequently in people with lupus. The Advisory Committee on Immunization Practices (ACIP) recommends vaccination of all healthy persons older than 65, and individuals between the ages of 2 and 64 who are at increased risk for pneumococcal infection due to certain chronic illnesses or immunosuppressant therapies. While lupus is not specifically listed, there are clinical situations that are common in lupus that may increase the risk of pneumococcal infection. These include: chronic kidney failure; nephrotic syndrome; dysfunction of the spleen; diabetes mellitus; and exposure to long-term systemic corticosteroids and alkylating agents. Despite this, the vaccine is highly effective in the majority of lupus cases. Patients may be revaccinated every six years, more frequently in those with a lengthy antibody response. As with most vaccines, the possibility of vaccine-related worsening of lupus activity has been a theoretical concern. There have been occasional reports of lupus flares following pneumococcal immunization, but large studies have not demonstrated a relationship. Read more about Vaccinations and Lupus

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, November 12, at 3 p.m. Eastern Time. The LFA welcomes Dr. Laura Coleman, who will serve as the guest expert for the Healthy Eating & Weight Management & Lupus chat. Dr. Coleman is a registered dietitian who received her Ph.D. in Nutritional Sciences from Tufts University School of Nutrition. Her early work focused on metabolic changes in people with rheumatoid arthritis, and she later began work on metabolic changes in people with lupus. She is a member of the Lupus Now Advisory Board for the Lupus Foundation of America (LFA), as well as a member of the Materials Review Panel of the LFA Education Committee. She has published numerous articles on diet and rheumatic disease and is the editor of a new textbook entitled Nutrition and Rheumatic Disease, published by Humana Press. Dr. Coleman's areas of interest include nutrition and childhood obesity. You can submit a question in advance here. We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here. As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Good morning everyone ... Hope this finds you doing well. I wanted to highlight an updated section of content on the lupus.org website ... the Advocacy & Legislation area. The LFA Government Relations team is responsible for federal, state, and international legislation and issues that affect people with lupus. They work with Members of Congress at the federal level, and with LFA chapters at the state level to raise awareness and advocate for research funding. Let me share some of those updates with you. Legislative Issues & Successes There are many important government relations issues that affect people with lupus. They include: the Lupus REACH Amendment; Fluorescent Light Bulbs; H.R. 6331, the Medicare Improvements for Patients and Providers Act; and Appropriations for Lupus (CDC, OWH, and DoD). You can also read about the Legislative Priorities for FY2009. Become an e-Advocate Take action on issues that matter and stay informed about important policy issues. Advocacy Day Share your story with Members of Congress in person. Come to Washington, DC, each spring! Advocacy Toolkit The Advocacy Tool Kit provides information for LFA e-Advocates on how to be a voice on Capitol Hill for people with lupus and their families. State Advocacy Learn about state and local advocacy initiatives. That's your lupus scoop for today. Have a great Wednesday. Until next time, Wick

Good morning everyone: It's been a while since I've done this, and so I would like to share a lupus blog with you. It is called Despite Lupus. It's written by a woman -- Sara -- who lives here in the metro Washington DC area ... Alexandria, Virginia to be exact. Here's a little bit about Sara ... in her own words. "A little more than 7 years ago, I was diagnosed with Systemic Lupus Erythematosus, or SLE. I had been married less than 6 weeks, was at a highpoint in my career in television production, and had little interest in letting a chronic illness upset my plans for the future. Lupus had a different idea, and while I fought to keep hold of the life I'd known (demanding, yet fulfilling career, busy social life, packed vacation schedule), after four years of running my body into the ground, I couldn't take it anymore. I was fighting life, instead of living it. Over the course of about two years, I downshifted almost every aspect of my life. I quit my job and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. Today, I am living well, despite lupus!" If you have some time, swing by Despite Lupus and say hi to Sara. That's the lupus scoop from my end. Until next time, Wick

We ran this picture last year, and wanted to share with everyone again. Photo courtesy of Courtney Humphries in the Lupus Foundation of America's Kansas Chapter. Also wanted to share this interactive pumpkin carving website with you as well. Best "witches" for a "spooktacular" Halloween everyone!

Federal and postal employees, as well as military personnel and retirees, can contribute to the Lupus Foundation of America through the Combined Federal Campaign (CFC). The LFA is listed in the Community Health Charities federation for National Voluntary Health Agencies. When you complete your CFC pledge card, designate the Lupus Foundation of America Agency #10566 to receive your gift. Your contribution will be used to support LFA research, education, and support programs. You can learn how your donations are used here. On behalf of the 1.5 million Americans with lupus, we extend our sincere appreciation and gratitude for your generous and loyal support.

The American College of Rheumatology (ACR) annual meeting is being held in San Francisco, CA, October 24-29, 2008. As in years past, staff from the Lupus Foundation of America are attending this meeting, to hear the latest in lupus-related research. One of the first things to come from the meeting, that I can share with you, is in regards to epratuzumab. Study results show epratuzumab provided clinically meaningful reduced disease activity in patients with lupus. To learn more, read the press release. As other research findings and other news from ACR become available, I will share that with you. And within the next several days, check back to read a recap of the meeting’s highlights.

Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America. President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638). This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives. These programs include: Centers for Disease Control and Prevention (CDC) In 2003, the LFA successfully advocated to have Congress provide funding for the CDC to expand the National Lupus Patient Registry (NLPR). LFA efforts have led Congress to triple funding of the NLPR since its inception. The NLPR will be funded at their current level of $3.122 million through March 6, 2009. The NLPR is integral to completing the first national epidemiological study to determine the true national incidence and prevalence of lupus among all populations, and for determining the burden of the disease on individuals, families and society. This information also is important to LFAs efforts to stimulate additional investment by pharmaceutical and biotechnology companies to develop safe and effective therapies for lupus. It has been nearly 50 years since a new drug has been approved specifically for lupus and the LFA is supporting several initiatives to address this serious problem. Department of Health and Human Services Department Office on Women’s Health The appropriations legislation also continues funding for the Office of Women’s Health for initiatives to improve public awareness of lupus and conduct education projects on lupus. These efforts help to improve the early diagnosis and treatment of lupus, one of the LFA’s highest priorities. In 2007 the LFA collaborated with the U.S. Department of Health and Human Services Office on Women’s Health and The Advertising Council to develop the first ever national public advertising campaign on lupus. The campaign is a three-year, $2.3 million effort to increase public awareness and understanding of lupus with an emphasis on populations most at risk for developing the disease. The U.S. Department of Defense Peer Reviewed Medical Research Program (PRMRP). The recently enacted legislation provides continued funding for the PRMRP through the end of the 2009 fiscal year. Lupus again is one of the diseases eligible to receive this research funding. To date, $5.8 million has been awarded for lupus research, including three studies on lupus biomarkers totaling $3.1 million. The LFA first proposed a PRMRP research program on lupus biomarkers to members of the House Appropriations Committee in 2004. Validated biomarkers for lupus are necessary to develop screening tools to detect undiagnosed cases of lupus and improve monitoring of response to treatment. Recognizing the relevance of lupus to thousands of military personnel and their dependents, Congress responded by authorizing PRMRP funding for lupus studies starting in Fiscal Year 2005. The LFA has continued to advocate for the program each year through its public policy initiatives. LFA Advocacy Efforts Improve Quality of Life for People affected by Lupus Funding for lupus research and education programs supported through federal agencies has been a long-recognized priority for LFA advocacy efforts. “Each year, LFA brings more than 350 lupus advocates to Washington, including people with lupus, their families, physicians, and lupus researchers, to advocate for more funding for lupus research and education programs,” said Sandra Raymond, LFA President and CEO. “LFA-led advocacy initiatives have opened new sources of much-needed funds to support research on lupus, provide for improved government services for those living with lupus, and increase public awareness to improve early diagnosis and treatment of lupus. The LFA will continue to work with congressional and administrative leaders to further expand federal support for lupus initiatives so people with lupus can have hope that more effective treatments and, ultimately, a cure can be found.”

The Fall 2008 Walk for Lupus Now season will end this weekend. Here are the communities with Walks taking place.

• Phoenix, AZ -- Saturday, October 25, 2008
• Miami Beach, FL -- Sunday, October 26, 2008
• Philadelphia, PA -- Sunday, October 26, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park. Happy Hump Day!

The Lupus Foundation of America (LFA) has awarded more than $1.1 million in new research grants and fellowships as part of its ongoing commitment to bringing down the barriers in developing new treatments and finding a cure for lupus. Lupus is a disabling and life-threatening autoimmune disease that affects approximately 1.5 million Americans -- that’s enough people to fill 30 baseball stadiums. This year’s LFA research grants will support innovative research initiatives in pediatric/adolescent lupus, lupus in males, and mid-to-late stage translational research. Funds for these initiatives were generously granted to the LFA through the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who in 2006, at the age of 24, passed away after a long battle with lupus. Additionally, two grant awards will support studies on the use of adult stem cells in lupus. Funds for these awards were provided by the Cooper Family Foundation. Other areas of research supported by the LFA National Research Program include cutaneous (skin) lupus, kidney disease and lupus, and the cognitive effects of lupus. The LFA also awarded five student summer fellowships to foster an interest in the field of lupus research. There has not been a new treatment approved for lupus in almost 50 years. Medical and scientific breakthroughs in research lead to new treatments, and without research people with lupus will continue to wait. The LFA received more than 77 grant applications, totaling an estimated $7.8 million in requests for lupus research funding. In 2008, the LFA National Research Program has awarded funding to 13 institutions and 19 researchers in its continuing effort to overcome the challenges that have hindered lupus research in the past. At least five million people worldwide have a form of lupus, a disease which causes the immune system to go awry and attack the body's own tissue and organs, resulting in debilitating and sometimes fatal consequences that include heart attacks, strokes, seizures, and kidney failure. Since its inception, the LFA and its affiliated chapters have provided $21 million to fund more than 400 grants to research scientists at nearly 100 leading academic and medical institutions throughout the nation. LFA seed grants have led to tens of millions of dollars from other institutions, including the federal government, to allow these researchers to continue their work. In addition to direct support – made possible through donations from individuals, corporations, foundations, and a nationwide network of LFA chapters and support groups, the LFA advocates to greatly expand funds for lupus research through grants from state and federal governments, and through private investment from biotechnology and pharmaceutical companies.

• Read about the Novel Pilot Projects in Lupus Research (Dermatology, Nephrology, General)
• Read about Neuropsychiatric Lupus (NPSLE) Research
• Read about the Michael Jon Barlin Pediatric Lupus Research Program
• Read about Male Lupus Research
• Read about Adult Stem Cell Research
• Read about the 2008 Recipients of the Gina Finzi Memorial Student Summer Fellowship Program

Here are some communities with Walk for Lupus Now Walks taking place this weekend.

• Los Angeles, CA -- Saturday, October 18, 2008
• Seattle, WA -- Saturday, October 18, 2008
• Davie, FL -- Sunday, October 19, 2008
• Union County, NJ -- Sunday, October 19, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park. Have a great Wednesday!

Morning everyone ... a few lupus-related items to share with you. "Reproductive Health & Lupus" Chat Transcript Posted Online First, thanks to everyone who attended the "Reproductive Health & Lupus" webchat hosted by Dr. Bonnie Bermas on Wednesday. It went really well. A copy of that chat transcript has now been posted online. And, we hope you will join us for the November 12, 2008 webchat. The topic is "Healthy Eating & Weight Management & Lupus," and it's hosted by Dr. Laura Coleman. Mark your calendars for that. Walk for Lupus Now walks this weekend Here are some communities with Walks taking place this weekend.

• Greater Bay Area, CA -- Saturday, October 11, 2008
• Findlay, OH -- Saturday, October 11, 2008
• Silver Lake Village, OH -- Saturday, October 11, 2008 (4th Annual Kassie Lap ‘Round the Lake for Lupus)
• Spokane, WA -- Saturday, October 11, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park. Together, we can find a cure. Until next time, Wick

Is your worrying habit out of control? Let's face it: there are plenty of things to worry about these days: the economy, your family and friends' well-being, your job, your bills, and your own health and day-to-day concerns. But sometimes worrying can start to interfere with the enjoyment of your everyday life. And then you start worrying about that! How can you stop this cycle of worry? Establish "worry time." Each day, designate a period of time -- say, 15 minutes every evening at 7 p.m. -- where you allow yourself to do nothing but worry. During this time, write down everything you’re anxious about and your best solution to your concerns. While this activity won't necessarily solve your worrying, it will help direct intrusive thoughts to a more appropriate time. You might even find that when worry time rolls around, you've forgotten what you wanted to worry about! "Worry time" can also be applied to other reactions or feelings you might be having. Many people have trouble coping because they often feel sorry for themselves. Carving out a "pity time" during the day will help you deal with these emotions. Modify this technique for anything else, too, such as "depression time," "guilty time," or "angry time." If you feel that 15 minutes isn't enough time, you can always start with two sessions during the day or expand your worry time to 30 minutes. Remember, this is your tool to use. Figure out what works best for you, and learn how it feels to let go of your worries for the rest of the day. Taken from the Fall 2008 issue of Lupus Now magazine. Reminder: Reproductive Health & Lupus Webchat Today at 3 p.m. ET The LFA welcomes Dr. Bonnie Bermas, who will serve as the guest expert for the Reproductive Health & Lupus chat. We hope you can join us this afternoon. To do so, you can log in to the live chat here.

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, October 8, at 3 p.m. Eastern Time. The LFA welcomes Dr. Bonnie Bermas, who will serve as the guest expert for the Reproductive Health & Lupus chat. Dr. Bonnie Bermas is an Associate Rheumatologist, Robert Breck Brigham Arthritis Center Assistant Professor of Medicine, Harvard Medical School. After attending Princeton University, Dr. Bonnie L. Bermas received her medical degree from Mount Sinai School of Medicine in New York where she was elected to the Alpha Omega Alpha honor society. Following the completion of her internship and residency in internal medicine at the Columbia Presbyterian Medical Center, she pursued fellowship training in rheumatology at the Brigham and Women’s Hospital in Boston and the National Institutes of Health (NIH) in Bethesda, Maryland. Since 1993, Dr. Bermas has been an attending rheumatologist at the Robert Breck Brigham Arthritis Center. She has a special interest in the treatment of rheumatic diseased during pregnancy, the Antiphospholipid Antibody Syndrome, and Systemic Lupus Erythematosus. She has educational material on these subjects and is recognized as a regional expert in these areas. In 2005, Dr. Bermas was named the clinical director of Systemic Lupus Erythematosus and Antiphospholipid Syndrome Center. Recently, she was awarded a clinical innovation grant from the Brigham and Women’s Hospital to improve the delivery of care and educational endeavors for patients treated in the SLE center. You can submit a question in advance here. We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here. As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

As you know, funds raised from Walk for Lupus Now Walks support lupus research, education programs, and patient and family support services. You can help people with lupus in your community who need your help. Here are some communities with Walks taking place this coming weekend.

• Delray Beach, FL -- Saturday, October 4, 2008
• Battle Creek, MI -- Saturday, October 4, 2008
• Rochester, NY -- Saturday, October 4, 2008
• San Diego, CA -- Sunday, October 5, 2008
• St. Louis, MO -- Sunday, October 5, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park. Together, we can find a cure.

Until next time, Wick

Since their launch February 8, 2008, the LFA message boards have really taken off and now claim more than 2030 registered users. The boards provide an opportunity for individuals to reach out and seek answers to questions about living and coping with lupus, as well as support one another in an understanding and caring environment. To access our message boards, go online to http://messageboards.lupus.org/. Discussion categories include Recently Diagnosed with Lupus, Lupus Treatments, Men & Lupus, and Coping with Lupus. Based on user feedback, two new categories were recently added: Disability, Insurance and Social Security Issues, and Lupus in the News. In addition, people from all over the world come to LFA’s message boards, from places as far away as Romania, Malaysia, the Netherlands, Iceland, Australia, and Germany. When you have some time, visit http://messageboards.lupus.org/ and read some of the threads. Or better yet, join the discussion. You’ll understand why it’s so important that we continue to raise the public's awareness about the devastating effects of this disease.

Beginning with the Spring 2009 issue, Lupus Now magazine is going to debut a new feature called "Fatigue Busters." As such, we want to print your answers to this question: "What suggestions do you have to beat fatigue?" Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Fatigue Busters" in the subject line of your email. We'll print your responses in each issue.

Good morning everyone: I would like to share a chronic illness blog with you. It is called Keep Working, Girlfriend: Women, Work, and Chronic Illness. It's co-written by 2 women -- Rosalind Joffe and Joan Friedlander -- both of whom live with a chronic illness. Here's a little bit about Rosalind and Joan ... in their own words. "First, we each live with chronic illness. That means we know the daily questions, the self doubt, the pain, the fatigue, and the fear. We’ve learned how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home. We’ve experienced how difficult it can be to keep working, especially if you’re a woman living with a chronic illness. Let’s face it. The work world is a tough place for women who are “healthy,” and it can feel impossible when you’re managing an illness, too." If you have some time, swing by Keep Working, Girlfriend: Women, Work, and Chronic Illness and say hi to Rosalind and Joan. That's the lupus scoop from my end. Until next time, Wick

Morning everyone ... we had perfect weather here in the DC area this weekend. And today marks the arrival of fall, one of my favorite seasons. Fall also heralds the arrival of Walk for Lupus Now, with walks taking place all over the country. As you know, funds raised from Walk for Lupus Now Walks support lupus research, education programs, and patient and family support services. You can help people with lupus in your community who need your help. Here are some communities with Walks taking place this coming weekend.

• Birmingham, AL -- Saturday, September 27, 2008
• Indianapolis, IN -- Saturday, September 27, 2008
• Kansas City, KS -- Saturday, September 27, 2008
• Cleveland, OH -- Saturday, September 27, 2008
• Toledo, OH -- Saturday, September 27, 2008
• Portland, OR -- Saturday, September 27, 2008
• Memphis, TN -- Saturday, September 27, 2008
• New Haven, CT -- Sunday, September 28, 2008

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park. Together, we can find a cure. Until next time, Wick

Morning everyone ... Just a few lupus-related items to share with you. "Healthy Aging & Lupus" Chat Transcript Posted Online First, thanks to everyone who attended the "Healthy Aging & Lupus" webchat hosted by Dr. Ronenn Roubenoff on Wednesday. It went very well. A copy of that chat transcript has now been posted online. And, we hope you will join us for the October 8, 2008 webchat. The topic is "Reproductive Health & Lupus," and it's hosted by Dr. Bonnie Bermas. Mark your calendars for that. Fall 2008 issue of Lupus Now magazine is available In the new Fall 2008 issue of Lupus Now, Positive Makeup introduces our readers to Miss Nicole Paxson, who was diagnosed with lupus at age 12. “I’m a firm believer that things happen for a reason,” she says. “Find out what that reason is, and find something you’re passionate about.” Nicole’s passion is her cosmetics company. Ask anyone about their lupus medications and they’ll probably tell you it’s a true "love-hate” relationship. In this feature article, Tough Medicine acknowledges that, at one time or another, just about everyone with lupus has dreamed of tossing all their meds right down the drain. In the feature article Baby Steps you’ll meet people who have completed their families in a variety of ways -- from traditional pregnancy to adoption to surrogacy when lupus prevented a pregnancy. The end result is what matters: a child to love, no matter how he or she became part of the family! So, there’s your sneak peek at what’s in store in this fifth anniversary issue of Lupus Now. We hope you enjoy it! LFA Message Boards Continue to Grow As of this morning, there are 1964 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here. That's your lupus scoop from my end. I hope everyone has a great weekend. Until next time, Wick

The Editor of Lupus Now magazine is seeking people to help with the Spring 2009 issue. The topics of the articles are:

• Conquering your anxiety about living with an unpredictable disease like lupus
• Loss of sexual desire
• The importance of appreciating your mate
• How to help other people understand what you’re going through with lupus

If one of these topics resonate with you, and if you think sharing your story might help others, please send your name and contact information, and a little bit about yourself, to lupusnow@lupus.org. Interviews are done by phone and will take place at your convenience over the next three weeks. Reminder: Healthy Aging & Lupus Webchat Today at 2 p.m. ET The LFA welcomes Dr. Ronenn Roubenoff, who will serve as the guest expert for the Healthy Aging & Lupus chat. We hope you can join us this afternoon. To do so, you can log in to the live chat here.

A few weeks ago, I shared with you that Purdue University is working on a health communication study. Specifically, they’re looking to examine how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc. Purdue received a nice response after I posted their request (thanks to all of you), and they came back to me and asked if I wouldn't mind posting it again. It's their hope to try and reach those who were unable to participate the first time. The study / survey is purely academic in nature and takes no longer than 5-7 minutes to complete. In the survey, they use the term "blog" to refer to any online activity where you might read or share information in communities such as blogs, internet forums, and discussion boards. If you are interested in participating -- and regardless of whether you live in the United States, or around the world, you can take the survey here. Purdue University hopes the findings of this study could lead to better management capacities of chronic diseases, as well as an increase in funding for research related to online communities. If you choose to take the survey, thank you for doing so. Until next time, Wick

Osteoporosis is a major health concern for millions of Americans, both women and men. For people living with lupus, the risk of bone loss and fractures due to bone loss is even greater because of lupus medications like corticosteroids, and because of the disease itself. Caring for your bones through good nutrition, exercise, calcium / vitamin D supplements, and bone-growth medication is important if you’re at risk for bone loss. But there is one other part of your body that could be at risk: your teeth. Besides depleting the calcium needed to keep teeth healthy, medications used to treat lupus can also trigger osteonecrosis of the jaw (ONJ), a rare condition that causes bone tissue to deteriorate and the jawbone to be exposed. However, catching symptoms of ONJ early can help prevent most pain and any serious loss or destruction of the jawbone. Here’s what to look for:

• Toothache
• Jaw pain
• Exposed bone
• Loose teeth
• Recurrent soft-tissue infections
• Numbness or feeling of heaviness in the jaw

If you’re taking an oral bisphosphonate, get regular dental checkups and alert your dentist to this and all other medications you’re taking. Be sure to tell your dentist about bleeding gums or any unusual feeling in your teeth. Although there is no cure for ONJ, it’s possible to experience some healing in your teeth and jaw with good oral care, use of antibiotics, and daily mouth rinses with antibiotic solutions. Taken from the Fall 2008 issue of Lupus Now magazine

I recently became aware of a health-related study / survey that I wanted to share with you. Purdue University is currently working on a health communication study. Specifically, they’re looking to examine how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc. The study / survey is purely academic in nature and takes no longer than 5-7 minutes to complete. In the survey, they use the term “blog” to refer to any online activity where you might read or share information in communities such as blogs, internet forums, and discussion boards. If you are interested in participating, you can take the survey here. Purdue University hopes the findings of this study could lead to better management capacities of chronic diseases, as well as an increase in funding for research related to online communities. If you choose to take the survey, thank you for doing so. Until next time, Wick

The Lupus Foundation of America (LFA) has announced the launch of the Center for Clinical Trials Education (CCTE), a resource for people interested in learning about and joining lupus clinical trials. The initial programs of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programs on clinical research offered through the LFA’s network of 38 chapters around the country. The CCTE Website (www.lupus.org/clinicaltrials) has extensive information about clinical trials and clinical trial participation. It includes information on the rights and responsibilities of study volunteers and a list of important questions for someone with lupus to consider before joining a study. A trial-locating service on the Website has links to existing lupus clinical trials. Visitors can find details about individual studies, whether they are seeking volunteers, and the medical centers where the trial is being conducted. Future enhancements to the Website include a registry where individuals with lupus can volunteer to participate in current or future trials underway in their area. “The growing number of lupus clinical trials and the rising level of interest among people with lupus about clinical research led us to the decision to create this new center,” said Sandra C. Raymond, the LFA’s president and chief executive officer. “We have already seen an increase in demand for people with lupus to serve as study volunteers. At the same time, people with lupus have voiced frustration in finding trusted information to make informed decisions about joining a trial. The CCTE will help meet those needs.” Increased efforts to develop better treatments have created new challenges that the LFA is working to address. According to Ms. Raymond, currently there are approximately 51 lupus clinical trials and 37 compounds being tested as lupus treatments. She estimates that as many as 22,500 people with lupus will be needed as volunteers for research studies in the next year. The CCTE will make it easier for people with lupus to identify trials underway in their area. The LFA is partnering with the Center for Information and Study on Clinical Research Participation (CISCRP), an independent and internationally recognized not-for-profit organization dedicated to clinical research education. Through this relationship the CCTE Website is providing information about clinical trials in English and Spanish tailored to people with lupus. “Whether to participate in a clinical trial at a given time is a very personal decision,” noted Joan T. Merrill, M.D., medical director of the LFA. “Sometimes it makes sense to participate if current treatments aren’t working, if there are side effects of the treatments a person is taking, or just because it’s clear that without clinical trials, there won’t be progress in treating lupus. But not everyone is a candidate for a clinical trial. People need to talk to their doctor but also do their homework to learn as much as they can about what’s involved before they volunteer for a clinical trial. The Lupus Foundation of America’s CCTE provides a way for them to get that information, from a source they trust.”

I would like to share a lupus blog with you. It is called Mommy's Broken: Life with Lupus. It's written by a woman living with lupus named dizzydownward. She lives in Alabama. Here's a little bit about dizzydownward ... in her own words. "I am a mommy of two little girls. I was diagnosed with SLE, lupus, in October of 2005. Life hasn’t been the same since. It is difficult and annoying and some days I would rather not get out of bed, and some days I can’t get out of bed. I would trade nothing for my life and my family." If you have some time, swing by Mommy's Broken: Life with Lupus and say hi to dizzydownward. That's the lupus scoop from my end. Until next time, Wick

LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks.

Chicago, IL -- Saturday, September 6, 2008 Detroit, MI -- Saturday, September 6, 2008 Piqua, OH -- Saturday, September 6, 2008

Hobart, IN -- Saturday, September 13, 2008 Des Moines, IA -- Saturday, September, 13, 2008 Baltimore, MD -- Saturday, September 13, 2008

Nashville, TN -- Saturday, September 13, 2008

Naperville, IL -- Sunday, September 14, 2008

The Lupus Foundation of America Patient Education Committee has reviewed and approved a number publications and other materials for use in educating individuals and families about lupus and its health effects. Items with code # are available for purchase online through the LFA store or by calling toll-free 1-866-4-THE-LFA (866-484-3532). LFA chapters also offer approved books for sale. The LFA's "Seal of Approval" List (PDF - 16 pages) * Documents denoted with (PDF) require Adobe Acrobat software.

Researchers at Yale University recently discovered a way that B cells can be activated in the absence of T cells. Many researchers had believed that T cell activation of B cells was required to produce auto-antibodies, or antibodies that target “self,” causing autoimmune diseases, like lupus. While the concept of B cells being activated without help from T cells is not totally new, this study may give some insight into why therapies that target T cells have not worked in past studies on lupus. Read the Yale University release.

Karen B. Evans of Baltimore, Maryland was elected Chair of the Lupus Foundation of America, Inc. (LFA) Board of Directors during the Foundation’s recent Annual Meeting in San Antonio, Texas. Ms. Evans will lead the LFA Board’s strategic initiatives to bring national attention and generate increased public and private support to fight lupus, an unpredictable and potentially fatal autoimmune disease. Ms. Evans has been a member of the LFA Board since 2003 and previously chaired the Board’s Education Committee. In addition to her work with the LFA, Ms. Evans serves as Executive Director of the Will and Jada Smith Family Foundation. She previously was Executive Director of the Northwest Baltimore Corporation, and a founder and Chair of the Board of the Park Heights (Maryland) Community Health Association. Ms. Evans succeeds Marjorie Susman of Chicago, Illinois who will remain on the LFA Board as Immediate Past Chair. Also elected as officers of the LFA Board were Cindy Coney of Tampa, Florida, Vice Chair; Tomiko Fraser Hines of Los Angeles, California, Secretary; and Peter Schwab, of Chicago, Illinois, Treasurer. Ms. Coney is the President of Monarch Training and Consulting. Ms. Fraser Hines is a professional actress and a model and spokesperson for Maybelline New York. Mr. Schwab is the Managing Director of Macquarie Securities, Inc. Two new directors were elected to the LFA Board of Directors. They are Loretta Cross, of Houston, Texas, and Brian Kaplan, of Washington, DC. Ms. Cross is Managing Partner, National Recovery & Reorganization for Grant Thornton LLP, and a Partner in the Economic Advisory Services Group of the Houston office of Grant Thornton. Mr. Kaplan is Associate Director of Marketing and Sales, Technology Practice for the Corporate Executive Board (CEB), in Washington. Re-elected to the Board were Lynn Blandford of Houston, Texas, and Pamela Greenberg of Washington, DC. Ms. Blandford is Senior Consultant for the Financial Reporting and Transaction Support Group of Sirius Solutions. Ms. Greenberg is Executive Director of the American Managed Behavioral Healthcare Association. View a complete list of the 2008-2009 LFA Board of Directors.

I would like to share a lupus blog with you. It is called Lupus Heart 2 Heart. It's written by a woman living with lupus named Speaker of the Word. The focus of her blog -- Lupus Heart 2 Heart -- is to provide a place to "celebrate your journey of survival with lupus, and share the inspirational lupus journey of others. We welcome you to add your laughter, your joy and your words of inspiration to this site." Here's a little bit about Speaker ... in her own words. Speaker of the Word is the founder and president of Arise Enterprise and a native of Columbus, Georgia. She earned a Bachelor of Science Degree in Communications from Mercer University in Macon, Georgia. She is and/or has been associated with such organizations in the following capacity: former board member for the Lupus Foundation of America, Georgia Chapter, and A House Divided Cannot Stand; a volunteer spokesperson for the Arthritis Foundation; and a public relations person and steering committee member for the Atlanta Project - Decatur Chapter. She has been married for 15 years. If you have a few moments, swing by Lupus Heart 2 Heart and say hi to Speaker. That's the lupus scoop from my end. Until next time, Wick

Morning everyone ... Sorry "On the Road to a Cure" has been silent for several days. Apparently Blogspot.com inadvertently flagged this blog as a "spamming blog." As a result, the blog was locked down until a review was done to make sure it was legit. And now we're back online. Wanted to give another plug for our message boards, as we have a new category. But first, let me share this with you. As of this morning, there are more than 1620 registered users for the LFA Message Boards. Which is awesome. If you haven't joined the boards yet, you don't know what you're missing. Get in on the action now! Join the LFA message boards today. We have added 1 new category -- "Disability, Insurance and Social Security Issues." The reason we added this category is because we noticed a lot of people were inquiring about Social Security Disability. The main question being asked was "How do I apply?" Plus, we wanted to create a space where you could share your advice and experiences, about topics like "what to do if you're having problems with your insurance," or "what do you do if you've been denied disability benefits by Social Security?" We hope you'll join us on the message boards. Until next time, Wick

The Lupus Foundation of America continues to expand its presence on the Web. Below is a listing of new areas of outreach. Come join us in these locations. CaringBridge Now you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design. eBay's Giving Works Program Are you a frequent buyer / seller on eBay? Do you want to help raise money on behalf of lupus research while winning those auctions? Learn more here. http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=11401 Facebook.com You do need to have a Facebook account to view this page. It takes a few moments to create one. If you already have an account, come join the "Lupus Foundation of America, Inc." group. http://www.facebook.com/group.php?gid=2300574157 MySpace.com http://www.myspace.com/lupusfoundationofamerica YouTube.com The Lupus Foundation of America's public service announcements (PSAs) have been posted to YouTube. Take a look. http://www.youtube.com/user/LupusFoundation

Hey everyone ... Hope you had a great weekend. Wanted to share a few things with you this morning. LFA Message Boards Continue to Grow As of this morning, there are more than 1560 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here. You may have noticed we have added 2 new categories -- "Welcome / Introductions" and "Lupus in the News." We've also tweaked a few others. Couple of interesting things we've noticed. First, more teens are finding our boards. As are more people in the Armed Forces. And our international friends are finding us as well. Australia, the United Kingdom and Malaysia have been representin' for a while ... and we can now add Romania to the mix. Welcome to everyone! Walk for Lupus Now LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks. Chicago, IL -- Saturday, September 6, 2008

Detroit, MI -- Saturday, September 6, 2008

Piqua, OH -- Saturday, September 6, 2008

Hobart, IN -- Saturday, September 13, 2008

Des Moines, IA -- Saturday, September, 13, 2008 Baltimore, MD -- Saturday, September 13, 2008 Nashville, TN -- Saturday, September 13, 2008

Naperville, IL -- Sunday, September 14, 2008 That's your lupus scoop for now. Until next time, Wick

The Lupus Genetic Studies at the Oklahoma Medical Research Foundation (OMRF) continue to look for families of all ethnic backgrounds, in which one or more individuals has been diagnosed with systemic lupus. Qualifying participants help by completing some study paperwork and donating a one time blood sample. Travel to Oklahoma City is not necessary and there is no cost to participate. Additionally, OMRF is looking for individuals with no lupus or lupus in their families to participate for comparison studies. To learn more, visit the OMRF website for more information.

UPDATE: Thanks to your overwhelming response ... the researchers have already identified all the participants for this study -- in 1 day! According to the researchers, the interviews have gone amazingly well and they learned so much from the callers that they are considering amending their IRB protocol to accept additional particpants. We should know more in a few weeks. Stay tuned! And thanks to everyone who participated.

An LFA-supported lupus investigator from Stanford University was featured in a story broadcast on San Francisco’s ABC affiliate KGO-TV. Paul Utz, M.D., Associate Professor of Medicine, and his team have begun studying genetic markers, taken from blood samples, to learn more about the physiology of specific lupus patients. The story also features LPGA pro golfer and Stanford University women’s assistant golf team coach Salimah Mussani, who has lupus. The story highlights the promising research underway to understand more about lupus and develop new, safe and effective treatments for the unpredictable and potentially fatal autoimmune disease. It has been more than 40 years since a new drug was approved by the U.S. Food and Drug Administration (FDA) specifically for lupus. Watch the KGO story about lupus. About Dr. Utz’s LFA Research Grant -- "Proteomic Studies in Systemic Lupus Erythematosus" Lay Abstract: Systemic lupus erythematosus (SLE) is an autoimmune inflammatory disease that can progressively damage multiple organs. The pathophysiology of SLE involves antibody formation against self-molecules, including those directed against RNA and DNA. By employing several mouse models of SLE, this proposal will test the hypothesis that the initiation and progression of autoantibody production and end organ disease in SLE requires interferon signaling through three different intracellular proteins called IFNAR-2, STAT-1, and IRF-9. The results can be rapidly translated to the clinic by identifying new targets for drug development, and by discovering novel biomarkers for SLE. About Salimah Mussani Read Salimah’s story in the Golf Canada magazine (PDF -- Documents denoted with PDF require free Adobe Acrobat software.) View her page on the Stanford University website

Morning everyone ... Just a few lupus-related items to share with you. First, thanks to everyone who attended the UV Light & Lupus Webchat hosted by Dr. Victoria Werth last Thursday. It went very well. A copy of that chat transcript has now been posted online. Second, today is the deadline for completing our reader survey for Lupus Now magazine. If you haven't already done so, please share your feedback with us. Take the survey here. That's your lupus scoop for now. Until next time, Wick

The Lupus Foundation of America would like to thank you for all of your phone calls and letters to the President and Congress. President Bush vetoed H.R. 6331, the Medicare Improvements for Patients and Providers Act before noon on Tuesday, July 15th. However, thanks to all of your efforts, the House of Representatives and Senate voted later Tuesday afternoon to override the President’s veto. The House voted 383-41 and the Senate later voted 70-26. H.R. 6331 now becomes law! This bill is important to people with lupus because it clarifies offlabel drug usage, protects special classes of prescription drugs, and provides coverage of the benzodiazepines and barbiturates which are currently excluded under Medicare Part D, along with other beneficiary protections. Thank you again for all of your time and support for people who depend on the Medicare beneficiary protections guaranteed by this legislation!

I would like to share a lupus blog with you. It is called The Lupus Runner. It's written by a runner named Brian Thomas. Brian knows a lot of people with lupus. His mother-in-law has lupus. He and his wife have colleagues with lupus. He's even had students and known fellow runners with lupus. So Brian decided to help. In September 2007, he ran the North Country Trail 50-mile ultra-marathon in Manistee, Michigan. Accepting donations on behalf of the Lupus Foundation of America, Brian raised $5,000. This year, he is running the Haliburton 100 mile run to raise money for -- about public awareness about -- lupus. Brian will also join forces with other people who have been affected by lupus, and who want to make a difference. If you are in Michigan, and would like to help Brian or join him in the marathon, contact him at fundraising@thomaswallace.org. Here's a little bit about Brian ... in his own words. "I'm an instructor at Saginaw Valley State University located in University Center, Michigan. I teach Global Cultures and Statistics. My research involves food, agriculture, and inequality. I have a Ph.D. in Sociology from Michigan State University and a M.S. in Environmental Studies from the University of Oregon. I'm married to my wonderful wife, Holli, and frequently run with our energetic one-year-old son Elliott, and our border collie Casey." If you have a few moments, swing by The Lupus Runner and say hi to Brian. That's the lupus scoop from my end. Until next time, Wick

Debbie DeCerbo of New Jersey is the winner of Firstgiving’s “winjuly” promotion. As the winner, Debbie has received a $500 donation to her Walk for Lupus Now fund-raising page for the Lupus Foundation of America’s New Jersey Chapter. Congratulations, Debbie, and we wish you all the best at the Union, NJ Walk for Lupus Now event on October 18, 2008. For those of you who are not familiar with it, Firstgiving is a simple and efficient way to raise money online for the charity of your choice. The Lupus Foundation of America has its own fund-raising center within Firstgiving. For the rest of the summer, Firstgiving will be running donation promotions where your use of social media to promote your fund-raising page could win a free donation for your cause. To learn more about this promotion, visit The Online Fundraising Blog.

Reminder -- the Lupus Foundation of America's Webchat is this Thursday afternoon, July 17, at 3 p.m. Eastern Time. The LFA welcomes Dr. Victoria Werth, who will serve as the guest expert for the UV Light & Lupus chat. Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine. Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She was a resident and later a chief resident and research fellow in dermatology at New York University. Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology. You can submit a question in advance here. We hope you can join us Thursday afternoon. To do so, you can log in to the live chat here. As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Representatives from the White House have said that President Bush will veto H.R. 6331, the Medicare Improvements for Patients and Providers Act. The next step is now to contact your Representatives and Senators to vote to override the President's veto of H.R. 6331. Learn more and take action today. Why this bill is important to people with lupus: Clarifies off-label drug usage The only drugs that currently have an indication for lupus are corticosteroids including prednisone, prednisolone, methylprednisolone, hydrocortisone; hydroxychloroquine (Plaquenil®); and aspirin. All other medications prescribed for lupus are considered off-label. It is important that people with lupus continue to have access to medications that are not currently approved for lupus. Protects special classes of prescription drugs If enacted, the law would require health plans to cover under Medicare Part D most classes of drugs for chronic diseases like lupus. Provides coverage of the benzodiazepines and barbiturates These drugs are currently excluded under Part D. Coverage is important because some physicians may prescribe these drugs for people with lupus who also may have seizures. We encourage you to take action today.

Good morning everyone: Hope you're as ready for the weekend as I am. My aunt and uncle are coming to town tonight and I'm looking forward to that. Have another quick movie review to share. I saw The Diving Bell & The Butterfly. The movie is the true story of France's Elle magazine editor Jean-Dominique Bauby, who suffered a stroke that left him fully paralyzed with a rare condition: locked-in syndrome. He could only communicate by blinking his left eye. The movie is absolutely phenomenal. Check it out. And now on to lupus news. Lupus Blog Spotlight I would like to share another lupus blog with you. It is called MaReVeilleVie. Here's a little bit about the blogger ... in her own words. "I am a 34 year old wife of a dashingly fabulous Airman, mother of a handsome, smart young man, daughter of a stunningly beautiful and courageous mother, and sister of two gorgeous and inspiring younger sisters. I also have a dog named Zoe. I was diagnosed with lupus in '95 and have been fighting its side effects with the help of the Lord. I know there is good reason for me having this illness, because I know that God won't put more on us than we can bear. So I must find my purpose and pursue it so that it's not in vain. I love to talk to different people and learn about different cultures, religions and backgrounds ... I have visited Mexico, and lived in Italy. I have learned some French, Italian and Spanish. I love to travel and see different places taking in sites, cultures, foods, and languages. I am AWAKENED because I have opened my eyes to the gifts given to me by God and I will spend my days growing spiritually and becoming closer to my Lord. My biggest wish is that I fulfill His destiny planned for me." If you have a few moments, swing by MaReVeilleVie and say hi. That's the lupus scoop from my end. Until next time, Wick

The LFA is working with a company who is conducting research to learn more from people who live with lupus. The goal is to learn how people with lupus cope with their medications, and the side effects of these medications. The conversations will last an hour by phone, and volunteers will be compensated for their time. In particular they are looking to speak with people who:

• Have been diagnosed with lupus within the last 3 years
• Have been/had been on a biologic for at least 9 months

It would also be helpful to have at least one participant who is between the ages of 18-20. If you’re interested in participating, please contact Nicole Nyack at the Lupus Foundation of America at nyack@lupus.org. The deadline to respond is this Friday, July 11.

Good morning everyone. Hope you had a happy and safe 4th of July. I was in Pittsburgh, visiting friends from college. Had a really fantastic time, except for the long drive home. Have another quick movie review with you. I saw Damn Yankees (1958). It's a film adaptation of a Broadway musical about a Washington Senators fan who makes a pact with the Devil to help his baseball team win the league pennant. Starring Tab Hunter, Gwen Verdon, and Ray Walston, Damn Yankees was an entertaining -- though slightly dated -- movie. Check it out. Are You Feeling Creative? Then Submit Something to the Lupus Now magazine's "Creative Corner." Do you write poems or essays? Or do you draw cartoons? If so, and you're looking for a creative outlet in which to share your talents with other people who are living with lupus, then submit something to the "Creative Corner" section of Lupus Now magazine. Take a look at what others have already submitted. To submit something, please contact the editor of Lupus Now magazine, Jenny Allan. She can be reached at: Lupus Foundation of America, Inc. 2000 L Street, NW, Suite 710 Washington, DC 20036 Phone: 800-558-0121 Fax: 202-349-1156 Allan@lupus.org We hope to see you in our "Creative Corner" soon!

It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues. The survey will be posted online through July 21. Take the survey here http://www.lupus.org/magazinesurvey. You’ll be able to read all about the results in the Fall issue, due out in early October.

Good morning everyone: Hope you had a great weekend. Mine was ok. Have another quick movie review with you. I saw No Country for Old Men. Made by the Coen brothers (who I really like), No Country for Old Men was a decent movie. I guess I had heard so much about it that my expectations were a bit high, and so while watching it, I was a little underwhelmed. For me, the Tommy Lee Jones parts of the movie were the weakest parts. Lupus Blog Spotlight I would like to share another lupus blog with you. It is called Getting Closer to Myself. The blogger's name is Leslie and she lives in Michigan. Here's a little bit about her ... in her own words. "This blog is about a lot of things in my life, but it's main purpose is to get my story out there and create awareness about autoimmune diseases. In April 2008, at the age of 22, I was diagnosed with rheumatoid arthritis and lupus. The road to get to that point was by no means an easy one. And if I can help make that road easier for others, that is my goal." If you have a few moments, swing by Getting Closer to Myself and say hi to Leslie. That's the lupus scoop from my end. Until next time, Wick

The Cooper Family Foundation has pledged $200,000 to the Lupus Foundation of America (LFA). Additionally, they have challenged us to match their pledge with new contributions from supporters of the LFA. Any gift that you contribute between now and August 15, 2008 will be matched by the Cooper Family Foundation. Your contribution will advance desperately needed research. Last year, the LFA could afford to fund only one in four requests from scientists working to bring us closer to new treatments and the answers patients and families still await. Think of how much more impact your gift will have when it is matched dollar-for-dollar by the Cooper Family Challenge. Your investment will have double the impact on our life-saving work, and will go twice as far in our fight against this life-threatening, life diminishing disease. With your gift today -- doubled by the $200,000 Cooper Family Challenge -- we can continue to fund promising research which yields new treatments, new hope, and ultimately, a cure! Thank you for giving generously now, when your gift will go twice as far!

Good morning everyone ... Lots going on today. So before I jump into the fray, I wanted to share some lupus news with you. LFA Message Boards Grow; Updates Coming As of this morning, there are more than 1260 registered users for the LFA Message Boards. Which is totally fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here. Also wanted to share that some new categories are coming to the message boards. You'll start to notice some changes over the next week. Lupus Now Magazine Needs Your Help! When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web. In the "Opining Online" column in the Fall 2008 issue of Lupus Now, we want to print your answers to this question: "What's the best advice you can give a person with lupus who’s applying for SSDI benefits?" Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Advice for SSDI Benefits" in the subject line of your email. We'll print as many of the responses as we can. Your deadline is July 15! That's all the lupus scoop from my end. Until next time, Wick

Last summer, the Food and Drug Administration (FDA) proposed new standards for the creation, testing, and labeling of over-the-counter sunscreen products containing ultraviolet A (UVA) protection. UVA rays stay at the same intensity throughout the day and the year, as opposed to ultraviolet B (UVB) rays, which are significantly stronger in summer. Previously, most of the FDA’s focus on sunscreen products involved reducing exposure to UVB light. The new rule would include a four-star rating system on the product label -- from a low of one star to the high of four stars -- so that consumers can easily find the level of UVA protection provided by each product. The number of stars would be based on two tests: one to determine the product’s ability to reduce the UVA light passing through it, and the other to determine the product’s ability to prevent tanning. The meaning of “SPF” will change as well, from “sun protection factor” to “sunburn protection factor.” If the rule is adopted, the maximum SPF value will increase from 30 to 50+, the highest value the FDA can verify using current testing methods. Also included would be a new “sun alert” statement and instructions emphasizing the importance of reapplying sunscreen. The FDA is still reviewing the submitted data and is expected to issue a final rule for over-the-counter sunscreens in the near future. Taken from the Summer 2008 issue of Lupus Now magazine

It’s a milestone I don’t think I expected. Today – June 20 – is the 1st birthday of the LFA’s blog, On the Road to a Cure. More than a year ago, a group of LFA staff sat in a conference room, trying to figure out other ways in which to engage people living with lupus. “Why doesn’t the LFA create a blog?” someone suggested. More than 155 posts later, here we are. I think it’s been a great year. People are reading this, and seem appreciative of the info that we’re sharing. And through the wonders of the blog, I have been fortunate enough to reach out to many of you – both here in the states, and around the world – who are living with lupus. It’s been amazing! And as a result of that contact, our blog now boasts links to almost 50 lupus bloggers worldwide. Although I am out of the office today, I did want to say thank you to everyone who reads our blog. Together, we share a journey to raise public awareness about lupus, and to one day find a cure for this disease. Have a wonderful weekend, Wick

Good morning everyone: Well let me tell you, after the miserably hot weather we've had here in DC as of late ... this 70 degree weather is awesome. I hope it sticks around for a while. Been a while since I shared a movie review with you. Based on a friend's recommendation (which has burned me before), I saw Lust in the Dust -- a spoof of Westerns -- over the weekend. Made in 1985, Lust in the Dust stars Tab Hunter, Divine and Lainie Kazan. Not too bad. It had some pretty funny moments. Lupus Blog Spotlight I would like to share another lupus blog with you. It is called Lupus Pie. The blogger's name is DC and she lives in California. Here's a little bit about her ... in her own words. "I'm a happily-married, successful attorney who thought she had it all. Then at age 33, I was diagnosed with lupus and premature ovarian failure. After three years of trying to conceive, my husband and I are embarking on yet another IVF cycle AND starting the adoption process. We have fallen in love with Ethiopia and cannot wait to adopt at least one child from that country. Please join us on our (unusually bumpy, but never boring) journey to parenthood." And for those of you who are curious as to why her blog is called "Lupus Pie" ... you can learn about the origin of the name here. If you have a few moments, swing by Lupus Pie and say hi to DC. That's the lupus scoop from my end. Until next time, Wick

It seemed only natural for our Summer magazine to have its cover story on how and why UV rays from the sun can be bad for people with lupus. But did you know that UV rays from fluorescent light can affect you, too? We’ll talk about how you can protect yourself from getting a rash or worse -- triggering a flare. (Hint: you can even be fashionable while you’re being safe!) In this story we also include the latest on the law to switch from incandescent bulbs to fluorescent bulbs, as well as the FDA’s proposed new standards for over-the-counter sunscreen products. Lupus is called the ‘prototypical’ disease for a good reason -- lots of reasons, in fact: symptoms come and go, mimic other illnesses, change over time, affect just about any part of the body, are different for different people. But what’s it like to have one or two or even three other illnesses besides lupus? For one thing, how do you know which symptoms belong to which condition? And which doctor is treating which condition? Read the stories of three people living with more than their share and gain a new perspective on overlapping symptoms and individual solutions. Our series of articles on clinical trials comes to a close with this third installment. Find out how researchers feel about the challenges and importance of enrolling participants of different ethnicities, and the different ways investigators reach out to diverse community groups and help overcome cultural barriers. All three articles will be linked with the LFA’s soon-to-launch Website for clinical trials education. It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues. The survey will be posted online but only through July 21, so look for it here, at lupus.org/magazinesurvey. You’ll be able to read all about the results in the Fall issue, due out in early October. You know those Internet warnings and water cooler chatter about all the things that can trigger or affect lupus? We put on our investigator hats and looked into the most enduring of these in order to help you separate the facts from the fiction. Five of the best known are featured in Lupus Living in this issue, and we’ll keep putting them in upcoming issues of LN as we hear about them. Your favorites, or any you wonder about, are welcome; send them to lupusnow@lupus.org with “Triggers” in the Subject line. And speaking of popular topics, who hasn’t experienced the dreaded weight gain from taking prednisone? In Wellness, we discuss how to deal with the physical and emotional effects of that unpleasant side effect. We also offer answers to eight of the most common questions people have when they are first diagnosed with lupus. In the Fall magazine we’ll look at eight more. Summertime means ... camp time! A variety of camps exist for families dealing with chronic illness, like Lupus Week at Camp Sunshine, and Camp Discovery for children with skin disease. Find out how your gang can take part. And teens, don’t miss this interesting roundtable discussion as three young ladies talk about staying active with lupus, while at the same time taking extra care in the sun. So, there’s your sneak peek at what’s in store in the Summer issue of Lupus Now. We hope you’ll enjoy it. Don’t forget, the survey is online now, and we need to hear from you. We get our best ideas from our dedicated readers, so you never know -- your suggestion could appear in one of next year’s magazines!

PARIS, FRANCE – UCB announced that data presented Thursday show that epratuzumab treatment demonstrated clinically meaningful improvements in moderate and severe flaring systemic lupus erythematosus (SLE) patients. The data were from the first placebo–controlled studies using epratuzumab in SLE patients and were presented at the annual European Congress of Rheumatology (EULAR). The clinical studies presented at EULAR showed that flaring SLE patients treated with epratuzumab experienced reduced disease activity and were less reliant on the use of steroids to control the disease than those receiving placebo. The incidence of adverse events was similar for the epratuzumab and placebo groups. “These initial clinical results for epratuzumab are very encouraging,” commented lead study author Dr Michelle Petri, Director, Lupus Center and Professor of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA. “Developing new compounds for SLE patients is critical because currently available treatments, such as immunosuppressants and corticosteroids, often have serious and debilitating side-effects. We look forward to seeing results from other clinical trials involving epratuzumab.” Epratuzumab is a fully-humanized anti-CD22 compound with the potential to modulate B-cell activity. Although the exact function of CD22 is not fully understood, it is known to be involved in B-cell development, function and survival. B-cells are known to contribute to SLE by producing antibodies against the body’s own tissues, causing the body’s immune system to turn on itself, attacking cells and tissue and resulting in inflammation and tissue damage. SLE is a chronic and potentially fatal autoimmune disease with a variable and unpredictable course. It can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system and is characterized by periods of flares, or exacerbations, interspersed with periods of improvement or remission. In the clinical studies, 90 patients were randomized to receive epratuzumab 360 or 720 mg/m2 infusions at weeks 0, 1, 2 and 3, with subsequent treatment cycles of two infusions one week apart, every 12 weeks, for up to four treatment cycles over a 48-week period. The efficacy endpoints included a reduction in disease activity, as measured by the BILAG* Activity Index, steroid sparing and improvements in both physician and patient global disease activity assessments. Both doses of epratuzumab resulted in clinically meaningful reductions in total BILAG scores versus placebo from week 4 through to week 48 and reduced steroid use. Also, according to physician and patient global assessment scores, more epratuzumab patients showed improvement compared with the placebo group, with a high degree of correlation between the patient and physician global assessments. Additionally, epratuzumab was shown to be well-tolerated in these studies, with a similar safety profile as placebo. The incidence of serious adverse events, adverse events in particular reflecting infections and infusion-related reactions, were similar across active and placebo treatments. UCB has initiated a new Phase IIb clincal study program for epratuzumab, which consists of two studies. The primary objective of the phase IIb program is to assess the dose response and the dose frequency for epratuzumab. Further information on the study can be found at Clinicaltrials.gov.

Good morning everyone ... And greetings from an incredibly hot Washington DC. Weather here the last few days has been in the high 90s, with a heat index of 108. Very unusual for this time of year. I hope wherever you are, it's considerably cooler. Wanted to share some lupus items with you. Transcript from Tuesday's chat posted online Thank you to everyone who attended yesterday's chat, featuring guest expert Dr. Jennifer Grossman, who answered questions regarding "Men's Health & Lupus." The chat went well. The transcript from that chat has now been posted online. You can read it here. Check out the schedule of upcoming chats here. Summer 2008 Issue of Lupus Now Coming Soon The Summer 2008 issue of Lupus Now will be available within the coming weeks. As always, this issue is full of great stories, including the third installment in the Clinical Trials series; an article on sun sensitivity; and a feature on lupus in overlap with other diseases. You can also read the latest features of "Ask Dr. Paul" and "Teen Talk." Keep an eye out for your copy of the Summer 2008 issue of Lupus Now! Walk for Lupus Now LFA's Spring Walk season is winding down and will pick up again in the fall. This is the last Walk taking place this spring. If you're in the Milwaukee area, we hope you can join us. Milwaukee, WI -- Saturday, June 14, 2008 That's your lupus scoop for today. Until next time, Wick

Research scientists and physicians – including scientific thought leaders from university centers, pharmaceutical and biotechnology industries, the National Institutes of Health, U.S. Food and Drug Administration, and other government agencies – addressed two important gaps impeding approval of new treatments for the autoimmune disease lupus during the Lupus Foundation of America’s (LFA) 2nd International Flare Conference June 5 and 6 in suburban Washington, DC. These experts discussed modifications to tools used to monitor disease progression and how lupus patients respond to treatment. They also worked to develop a consensus definition of a lupus flare, which is an increase in disease activity. It has been difficult to define a lupus flare because the disease manifests itself in diverse ways in different people, affects multiple organ systems, and can increase and decrease in severity from one day to another. Accurately and consistently measuring a flare is crucial to monitoring progression of the disease in patients and to evaluating the effectiveness of treatment over time. “This effort is part of the LFA’s strategy aimed at bringing down barriers that have obstructed progress on research and to advance the science of lupus,” said Sandra Raymond, LFA President & CEO. “The fact that no new drug therapies have been approved for lupus in more than four decades underscores the need to address issues and answer questions that have impeded the successful outcome of clinical trials of new, safe and effective therapies for the disease.” Without new approved drugs specifically for lupus, physicians must rely on therapies borrowed from other diseases. Many are highly toxic, causing side effects that can be worse than the primary disease. The LFA is working to bridge gaps in lupus research to stimulate additional public and private investment in the development and approval of new lupus treatments.