sending your check payable to the Chapter Office. Mailing informa- tion is on page 2. Checks must be received on or before May 19, 2012. Vol. 29, No. 3 Spring 2012 A newsletter to educate and support those affected by Lupus and find the cure Inside From the Editor's Desk 2 Schwarzenberger Joins Council 2 President's Note 3 Hayley Stone-Woman on the Go 3 Calling all Campers 4 May is Lupus Awareness Month 4 Benlysta Research Study 5 Walk for Lupus Now Update 5 Pain Linked to Obesity 6 Guardasil Safe 6 Dating Advice 6 New Lupus Test 6 Waterbury Show 7 Membership Invitation 7 Member Services 8 Quilt Raffle - May 20 at Bowl-a-thon K aren (Riddell) Dorey has been making quilts for seven years. This is the third quilt she has pieced and donated to the Lupus Foundation of America (LFA), Vermont Chapter. She has also been involved in raising money for the annual lupus bowl-a- thon and annual lupus walk/run for the past several years. She hopes to continue to help raise funds for lupus research, as her mom, Marilyn Cattieu, was diagnosed with lupus (SLE) in 1989. Lisa Therrien machine quilted the 82" x 90" quilt titled Seaside Escape. The owner of Mad River Quilts in Waitsfield, VT, Lisa’s been making quilts for 26 years and has done long arm quilting since 1997. In 2010 she expanded her business by opening a quilt shop on Main Street in Waitsfield. In this loca- tion she also offers classes and quilt camps. Visit www.madriverquilting.com. You can see the quilt in color on the Vermont Chapter’s website, www. lupusvt.org. You may purchase a raffle ticket for $1 or a book of 6 for $5 by Strike One for Lupus - May 20 Y ou can promote lupus awareness and support the Vermont Chapter of the Lupus Foundation of America by bowling from 1-3 PM at Champlain Lanes on Sunday, May 20, 2012. There’s still time to register your team of four or come as an individual and join someone else’s team. You or someone you know can register online at [email protected]or call 244-5988. The forms can also be picked up at Champlain Lanes in Shelburne or at the Twin City Lanes in Berlin. We will send you envelopes to put your pledge money in; each team is asked to raise a total of $200. There are special prizes for the team and individual who raise the most money and lots of other categories. We need to know by May 13th so don’t wait. If you can’t bowl, ask your friends and relatives to bowl for you. The lanes are handicapped accessible so you can come and cheer them on. Come join us for FUN, FOOD and PRIZES!!! A team of bowlers at the 2010 Lupus Bowl-a-Thon
Transcript
sending your check payable to the Chapter Office. Mailing informa-tion is on page 2. Checks must be received on or before May 19, 2012.
Vol. 29, No. 3 Spring 2012
A newsletter to educate and support those affected by Lupus and find the cure
Quilt Raffle - May 20 at Bowl-a-thonKaren (Riddell) Dorey has been making quilts for seven years. This is the third quilt she has pieced and donated to the Lupus Foundation of America (LFA), Vermont Chapter. She has also been involved in raising money for the annual lupus bowl-a-thon and annual lupus walk/run for the past several years. She hopes to continue to help raise funds for lupus
research, as her mom, Marilyn Cattieu, was diagnosed with lupus (SLE) in 1989. Lisa Therrien machine quilted the 82" x 90" quilt titled Seaside Escape. The owner of Mad River Quilts in Waitsfield, VT, Lisa’s been making quilts for 26 years and has done long arm quilting since 1997. In 2010 she expanded her business by opening a quilt shop on Main Street in Waitsfield. In this loca-tion she also offers classes and quilt camps. Visit www.madriverquilting.com. You can see the quilt in color on the Vermont Chapter’s website, www.lupusvt.org. You may purchase a raffle ticket for $1 or a book of 6 for $5 by
Strike One for Lupus - May 20 You can promote lupus awareness and support the Vermont Chapter of the Lupus Foundation of America by bowling from 1-3 PM at Champlain Lanes on Sunday, May 20, 2012. There’s still time to register your team of four or come as an individual and join someone else’s team. You or someone you know can register online at [email protected] or call 244-5988. The forms can also be picked up at Champlain Lanes in Shelburne or at the Twin City Lanes in Berlin. We will send you envelopes to put your pledge money in; each team is asked to raise a total of $200. There are special prizes for the team and individual who raise the most money and lots of other categories. We need to know by May 13th so don’t wait. If you can’t bowl, ask your friends and relatives to bowl for you. The lanes are handicapped accessible so you can come and cheer them on. Come join us for FUN, FOOD and PRIZES!!! A team of bowlers at the 2010 Lupus Bowl-a-Thon
virtually every weekday. Leave a phone message anytime.
Board of DirectorsAlfred Letourneau, PresidentHayley Stone, Vice PresidentMarilyn Cattieu, Secretary
Vacant, TreasurerCatherine Flanders
Maria HedinMarlene Hodgdon
Elissa JohnsonChristine Murphy
Virginia V. Lyons, Honorary
Medical ScientificAdvisory CouncilLin A. Brown, M.D.
Connective Tissue Disease
Sheldon M. Cooper, M.D. Rheumatology
Kathryn Schwarzenberger, M.D.Dermatology
Living With Lupus StaffEditor: Catherine Nelson
Layout: Laura Parette DesignIt is the policy of the Lupus Foundation of America,
Vermont Chapter, to publish articles pertinent to lupus and related diseases. We do not endorse any of the articles published herein, but publish
them for your information. We oppose self-diagno-sis and self-treatment and urge all who read this publication to discuss any concerns regarding diagnosis and treatment with their physicians.
From the Editor’s Desk Once again we’re approaching – or perhaps have already experi-enced – summer. It is a season I dreaded for years, not only because of hot weather, which I don’t really enjoy, but because of the increased need to protect myself from the sun’s rays. In my case it seems that the sun doesn’t give me a rash; it makes me ill. So I wore hats, long sleeves and long pants. On a hot summer day, I was not comfortable, and I felt that I stood out among people in their t-shirts or tank tops and shorts. Now many more people protect themselves from the sun, know-ing that it can cause skin cancer, as well as sunburn. So I see lots of people wearing hats. And there are many more sunscreen products to choose from, lots with higher SPFs. I’ve learned that a sunscreen may be giving me more protection than my long sleeves. So I’m freed from my “uniform of summer,” allowed to dress as others do, and I’m not the only person who isn’t a deep tan. And now I can buy clothing that really does protect me from UV rays. Feeling less restricted and less “odd” is important when you have lupus. There will always be times I wish people could see how awful I feel, but usually I don’t want to look like an eccentric or weirdo. It is one not-so-small way people with lupus can and do normalize their lives, a very important thing. On another subject, I am reminded, as always, that this newsletter is a team effort. Everyone who writes an article, however brief, or contributes a photo is essential to the success of each issue. I proof-read, but I need the help of others who see errors I’ve made and seen so often I no longer notice them. And, of course, it could not happen without Laura Parette, who lays it all out so that it makes sense and looks good. Many thanks to all of you.
Cathy Nelson
Dr.Schwarzenberger Joins Medical Scientific Advisory CouncilKathryn Schwarzenberger, M.D., is the newest member of the Vermont Chapter’s Medical Scientific Advisory Council. She is a dermatologist at Fletcher Allen Health Care, the Dermatology Residency Program Director and Professor at the University of Vermont (UVM) College of Medicine. She is truly qualified to advise the Lupus Foundation because her areas of expertise are dermatology associated with systemic diseases, general dermatology, immunodermatology and skin diseases associated with rheu-matologic diseases. She was educated at the University of Texas Medical Branch and did her internship and residency at Duke University Medical Center. She also had a fellowship in dermatology at the National Cancer Institute, Dermatology Branch. The Vermont Chapter is working to update and widen its Medical Scientific Advisory Council to include more rheumatologists and others who treat people with lupus, whether as medical doctors, psychologists or in some other area of expertise. The project is ongoing at this point. If you know someone you think should be included, please contact the Chapter Office with the person’s name and contact information.
President's NoteHave you ever gone into survival mode? I needed to do just that over the past month. First of all, my health really bothered me. I developed a cough that I could not shake. And as life would have it, I faced some major obligations having to partake in a church
weekend where I had to make a presentation and provide required supplies. My voice wouldn’t cooperate and my stamina was down. In addition, I maintain critical mailing lists for the church. Well, as luck would have it my computer crashed. Consequently, I was unable to email friends and unable to access needed information. So I went into survival mode, trying to build up my strength and get some much needed sleep. Thanks to some good friends, I managed to install a new operat-ing system on my PC and began the tedious task of installing soft-ware and rebuilding my email addresses. Fortunately, I had backed up my personal files the month prior to the crash. I also decided to see a doctor for my cough. Consequently, I am almost back on my feet. I cannot even imagine what it is like for people facing more seri-ous physical or emotional problems. I pray often for family members who are ill and for people with lupus who face troublesome flare-ups, lack of stamina or more serious problems. I don’t know what I would have done without the support of friends and family and the abiding love that God has for me. As a homeless man told me some years ago, in spite of life’s problems, we must thank God for what we have! Thank you so much, Fred Letourneau President, Vermont Chapter
Hayley Stone-Woman on the GoBy Susan Shea
Hayley Stone, Vice President of the Vermont Chapter, is a woman on the go, despite her lupus. She describes herself as a “workout fanatic,” and although lupus has reduced her activities by half, Hayley still lifts weights and pedals long distances on her road bike – sometimes as much as 50 to 60 miles. Cycling is a good sport for her now because she can’t run anymore due to joint pain. The exercise improves both her mental and physical well-being. According to Hayley, her greatest challenge is “learning to listen to my body.” There are times when her lupus is so bad she can’t work out for weeks. Hayley was diagnosed with lupus eight years ago, at age 34. Her symptoms came and went sporadically, and it took her three years to get a diagnosis. There was a week when she had a massive amount of joint pain. Another time she had trouble breathing. Before she was diagnosed, Hayley went on a family vacation to Florida, spent two weeks in the sun, and was very sick afterwards. Hayley’s main recurring symp-toms are pleurisy (inflammation of the sac around the lungs), which makes it painful to breathe; peri-carditis (inflammation of the sac surrounding the heart); and joint pain. Because of the pleurisy and pericarditis, she experiences a lot of pain on her left side, which radi-ates across her chest. She is also currently dealing with carpal tunnel syndrome. “The first four years of my lupus were really hard,” says Hayley. “It may have been because I didn’t know how to slow down and manage it.”
Acupuncture Helps Hayley goes to acupuncture regularly and takes herbs prescribed by her acupuncturist. She has found
this treatment, which she usually does every two weeks, very helpful in combating inflammation and joint pain. Hayley also finds acupuncture a good way to relax and relieve stress.
Getting Involved Two years ago, Hayley joined the board of the Lupus Foundation’s Vermont Chapter. “Having lupus, I wanted to raise more awareness of the illness in my age group and do more outreach,” explains Hayley. In addition to regular board meetings, Hayley has been involved in the Vermont Chapter’s two main fundraisers – the bowl-a-thon and walk-a-thon. She has recently taken on most of the work organizing the walk. It was Hayley’s idea to turn the walk into a walk/run to attract more participants and to move the walk from Montpelier to Burlington. This year the lupus walk will be held in Oakledge Park in Burlington on September 22. Hayley has helped to renew the board by getting more people, especially younger people, involved. She created a Facebook page to raise awareness of lupus in which 170 people are participating. “Hayley has really spearheaded the Chapter's effort to reach out to the (younger) computer generation,” Cathy Nelson said. In addition to her volunteer work for LFA, Hayley takes care of her two children – a 16-year-old daughter and an 11-year-old son, and is the lead singer in a rock band. She doesn’t let her lupus slow her down too much.
4 Living With Lupus
Calling All CampersThe Double H Ranch, located in upstate New York, is looking for sum-mer campers! Co-founded by Charles R. Wood and Paul Newman, Double H offers summer camp and year round programs for children (ages 6-16) and families with serious and life threatening illnesses, including Lupus. All programs are offered free of charge. Nestled on three hundred acres in the beautiful Adirondack mountains, stepping onto camp each summer is something the campers of Double H look forward to all year long. Due to their medical diagnoses, Double H is one of the only places many of the campers can truly be themselves. “My illness causes my joints to swell a lot and I’m often very tired. At Double H I don’t have to worry about other kids staring at me because I may walk funny when my joints hurt because everyone at camp understands. This is the one week a year I feel free to be myself, and I love camp for giving me that feeling” says camper Dave. “If it weren’t for Double H, I never would have been able to go to camp and I love camp!” Each summer, Double H Ranch offers seven 6-day camp sessions where campers are able to enjoy all the wonders of summer camp; including arts and crafts, horseback riding, swimming, fishing & boating, high ropes, a talent night, and even a trip to the Great Escape Six Flags Amusement Park. With a camper-to-staff ratio of 2:1 and all activities adapted to ensure every camper can participate, each day is guaranteed to be full of fun. A pediatric specialty physician from the Children’s Hospital at Albany Medical Center is onsite 24/7 each session. These physicians team up with the Double H Ranch’s medical staff making it possible for campers to enjoy all the fun of summer camp while having all their medical needs attended to. According to one camper, “Camp is a safe haven of pure bliss, a bubble that can’t be popped, a magical land that can’t be recreated by even the most creative people in the world. I had never been to a place where you could do so much in a day. Looking at the schedule of all the activities was enough to make you go crazy as a kid. Arts and crafts, swimming, fish-ing, talent shows, amusement parks…it all seemed too good to be true. As I learned, that was just a normal day at camp- what a place! Because of camp, I have learned a lot about myself and that I can do anything I set my mind to, regardless of my illness.”
This year marks the Double H Ranch’s 20th Anniversary and they are gearing up to celebrate camp like never before. For more information about the Double H Ranch includ-ing camper applica-tions, please visit their website at www.doublehranch.org or call 518-696-5676.
May Is Lupus Awareness MonthAlthough the Vermont Chapter tries to increase lupus awareness all year long, May is the Lupus Foundation of America’s (LFA) offi-cial Lupus Awareness Month, so we hope all of you will join in the effort. Of course, we hope all of you are increasing lupus awareness all year long, too. Go and bowl on May 20, mak-ing all your team members as well as all those who give you pledges aware of lupus. Let them know how it’s affected your life and that you are not alone. You’re one of about 1.5 million in the U.S. alone. Contact the Chapter Office for a bookmark (or a few of them) with this and other brief, useful facts about lupus to give to friends, fam-ily and anyone else who is inter-ested. Even if you can’t bowl on May 20, you can buy a raffle ticket for a beautiful quilt that will be raffled that day (see article and photo on page 1). Tickets are a dollar each or six for $5 and are available at the Chapter Office. Buy some yourself and sell them to a few friends, tell-ing them they’re benefiting the Lupus Foundation - another way to spread awareness. Make those in your world aware of lupus!
Ways to spread the word:-T-shirts with the Vermont
Benlysta Reseach StudyAs you may know, the Food and Drug Administration (FDA) approved Benlysta (belimumab) for the treatment of lupus last year, the first new drug approved for treatment of this disease in over fifty years. The Lupus Foundation of America (LFA) has produced an article on belimumab research from Arthritis & Rheumatism, January 2012, on its website. A syn-opsis follows. Researchers are still studying belimumab to better understand the biological mechanisms at work in the treatment of lupus. Disease activity in lupus is directly linked to circulating levels of B-lymphocyte stimulator (BLyS), a protein whose abnormal function significantly contributes to the autoimmune mechanisms typical of lupus. Belimumab neutralizes and thus reduces the actions of BLyS proteins in the blood. Further understanding of the effects of belimumab on immune functions will help researchers under-stand its mechanisms and, hopefully, allow it to be used more effectively. The researchers in this study were trying to learn about belimumab’s effect on lupus biomarkers such as levels of autoantibodies and comple-ment proteins in the blood. They studied patients in 52-week and 76-week randomized, double-blind, placebo-controlled trials to compare belimumab with a placebo. All patients continued to take the standard medications they were on. Participants in the study were randomly assigned to take either belim-umab at one of two doses (either 1 or 10 milligrams per kilogram of body weight) plus their regular medications. Their medications included steroids, immune-suppressing drugs and/or antimalarial drugs. They all stayed on their original treatments and could have them increased as needed. The effects of belimumab in addition to regular treatment were compared to standard treatment alone Outcome was measured primarily as the percentage of people who had significant improvement after 52 and 72 weeks. The SLE Responder Index (SRI) was used to gauge improvement. It combines measured improvement of overall lupus activity and signs that no part of the body has worsened. The data from the 52-week and 72-week studies were combined for analysis. Specific lupus biomarkers were studied, including various auto-antibodies, complement proteins and immunoglobulins. All of these were measured more than once during the research. After eight weeks of treatment with belimumab with either level of dosage, two kinds of antibodies were significantly reduced in the lupus patients taking belimumab compared to those getting the placebo. This remained true throughout the 52 weeks of the study. By week 52 those
Lupus Walk/Run Moves to Burlington This year’s Vermont Walk for Lupus Now Walk/Run will take place at Oakledge Park in
Burlington on September 22, 2012. After fourteen years of hosting walkathons (last year included runners), the Vermont Chapter has decided to use this site in Burlington, an area with a larger population. Also this location has facilities such as shelters and picnic tables and on-site parking and is handicapped accessible. Some things, such as the length of the event, 5K or 3.1 miles, will not change, and runners will be invited again this year. Look for more details in upcoming newsletters; on the Vermont Chapter website, www.lupusvt.org; at the Vermont Chapter office;
and on Facebook. Or contact [email protected]. You can start collecting pledges anytime on www.FirstGiving.com/LupusVermont. And save the date!
taking belimumab were free of two other antibodies, and people taking just 1 mg/kg (of body weight) had eliminated at least two other auto-antibodies. Patients who had had low levels of C3 and C4 comple-ment proteins at the beginning of the study saw those levels increase significantly when they took belim-umab rather than the placebo. Also those with high complement levels normalized as soon as the fourth week; the levels continued to be normal through 52 weeks, whether on the higher or lower dose of beli-mumab. SRI rates were higher for those treated with the new drug, and the risk of flares was reduced. There were some limitations to the study, since some biomarkers were measured in a 52-week study and some in the 76-week study. Also, little is known about changes in lupus biomarkers induced by beli-mumab treatment that may occur differentially according to ethnicity. In summary, the results show that belimumab treatment signifi-cantly reduces autoantibody levels and increases levels of complement proteins C3 and C4. Overall, the results suggest that this treatment is most effective in people with lupus who have significant disease activity and, particularly, those who have abnormal levels of lupus biomarkers in the blood. However, it should be noted that the effects of belimumab in very severe cases of lupus remain unclear. The complete report, including the researchers’ names, is available on the LFA website, www.lupus.org.
6 Living With Lupus
Pain Linked to ObesityAs reported in the May 2012 issue of Arthritis Advisor.
“A clear association between obesity and pain – with higher rates of pain identified in the heaviest individuals – has been found in a study of more than one million Americans. Researchers at New York’s Stony Brook University surveyed 1,010,762 respondents by phone between 2008 and 2010. Sixty-three percent of those who responded were classified as over-weight (38 percent) or obese (25 percent). Obese respondents were further classified into one of three obesity levels. In comparison to individuals with low to normal weight, the overweight group reported 20 percent higher rates of pain. The increase of reported pain in comparison to the normal-weight group grew rapidly in the obese groups: 68 percent higher for the slightly obese group, 136 percent higher for the more obese group, and 254 percent higher for the group considered most obese. The study’s authors said their findings suggest that obesity alone may cause pain, aside from the presence of painful diseases.”
Gardasil Appears Safe for Females with LupusIn 2011 The Lupus Newslink reported on a presentation at the European League Against Rheumatism 2011 Annual Congress regarding a study of the Human Papillomavirus (HPV) vaccine known as Gardasil. According to the results of a Chinese study, use of the HPV vaccine does not increase the incidence of flares or measures of antibodies in female lupus patients. The report goes on to say that the rate of HPV in lupus is significantly higher than in the general population, so vaccination is impor-tant, since HPV infection has been shown to be responsible for cervical cancer. The study was conducted by Professor Chi Chiu Mok from the Tuen Mun Hospital in Hong Kong over a six month period. The rate of flares was actually lower than in a group of SLE patients observed over five years but the reason for this is not known.
Dating AdviceAdvice from RA Today seems good for people with lupus as well as RA.
“Work on connecting in other ways first,” says Joyce Tomblin, M.Ed., a licensed professional counselor in Atlanta. “Don’t make it the issue – [lupus] is only one part of who you are.” “It’s definitely an added challenge,” adds Adena Batterman, LCSW, manager of rheumatoid arthritis support and education programs at Hospital for Special Surgery in NYC. “You have a feeling that disclosing it makes you vulnerable to rejection. Trust your instinct. As you develop a sense of trust, you may feel safe to open up.” When you feel the time is right, experts advise planning your conversa-tion with a potential partner before you start a sexual relationship. Planning is the operative word; your partner, remember, may need some time to process and adjust to your needs.
Swedish Research for New Lupus TestThis article is a synopsis of an item in an online magazine, Science Daily
Rheumatologists and researchers at Lund University in Sweden are working on a new test that would diagnose lupus faster and give indi-cations of the progession of the disease, according to a 2011 issue of The Lupus Newslink. Associate professor of Immunotechnology Christer Wingren at CREATE Health at the University says this blood test would make it possible to deter-mine quickly whether or not a per-son has lupus. Not only would the test shorten the period required for diagnosis, it would determine which type of SLE the patient has and how far the disease has progressed. Another advantage of the test is that it would enable a doctor to predict when the lupus will become active. Wingren expressed the hope that, using the test, a flare could be anticipated and prevented with medication. The test is done using a “chip” smaller than a fingernail which has a grid pattern created by research-ers who select certain antibodies to place in this grid. A drop of blood is placed on the chip, and the antibodies bind certain proteins, or biomarkers. This action creates a unique pattern for each patient, expressing his/her lupus. “…we show which pattern of biomarkers (the fingerprint) to look for. We get a large number of data signals that say whether the marker is present and in what quantity. These mea-surements are then entered into a computer which can present them to the doctors in a way this is easy to understand. It is this fingerprint which doctors could use in the future in clinical practice,” accord-ing to Dr. Wingren, who has been working on this disease-testing technique for a decade. If this research is successful, it could be used in hospitals in two to three years.
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Waterbury Home and Leisure ShowBy Cathy Flanders
It’s always an honor to be invited to take part in the annual Rotary Club Waterbury Home and Leisure Show. This year it was probably the two hottest days of “spring” in March, other years it has been snowing but it didn’t keep people from coming. A lot of people who stopped at our table have a friend or relative who has lupus; then there are others, who wanted to know all about it. The two common questions we get “Is it contagious and is there a cure?” We offered everyone a bookmark, which is supplied by the Lupus Foundation of America (LFA), general informa-tion, candy or a cupcake. Marilyn Cattieu, Marlene Hodgdon and Cathy Nelson were also able to give them some good information from their standpoints. Several people stopped to get a better look at the lovely quilt and buy some tickets. We sold some cookbooks and also gave a couple of people registration forms for the Bowl-a-thon. We’re looking forward to having a great spring and summer and maybe we will get another chance before next year to let people know who we are and what we do!
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Drugs?There is help for people who have no insurance coverage for their prescription medication. If you are one of those people, please contact the Vermont Chapter office by mail, phone or email, and someone will assist you.
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Member Services• Four issues annually of the Chapter newsletter, “Living With Lupus”• Three issues annually of the national magazine, “Lupus Now”• Lending Library, books for sale, LFA pamphlets and newsletter articles located at the Chapter Office 802-244-5988• Support Chats: Contact the Chapter office for details
Our MissionTo educate and support those affected by lupus and find the cure.
Foundation Goals• To promote public awareness and understanding of lupus and the problems caused by the disease.• To promote in people who have lupus an understanding of their condition and to provide moral support and encouragement.• To promote services that will benefit people who have lupus.• To promote lupus research which will lead to better and earlier diagnosis and treatment for people with lupus and which will eventually result in finding the cause and a cure for lupus.
Lupus Website!The LFA, Vermont Chapter’s website is up and running.
Visit us at www.lupusvt.org!
Find out what we’re doing and what you can do to help.
Have you visited the Lupus Foundation of America’s
website recently? Go to www.lupus.org
to get information about lupus and national events
as well as find links to local Chapters, like ours.
