S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701, New York, NY 10001
Phone: 212.685.4118   Fax: 212.545.1843
Lupus@LupusNY.org

Article source: http://www.lupusny.org/news/foundation-news/2013/05/21/toni-braxton-named-among-20-celebrity-health-activists-her-work-lupu

Today, the S.L.E. Lupus Foundation was honored to receive a Proclamation from the New York City Council urging New Yorkers to observe the month of May as Lupus Awareness Month. 

Councilwoman Maria del Carmen Arroyo presented the framed Proclamation in a special ceremony during the May 22 Council meeting at City Hall. “My daughter discovered she has lupus during her third pregnancy, so I know personally how difficult this disease can be,” noted Councilwoman Arroyo. “Lupus is frequently misdiagnosed but affects thousands of New Yorkers, so the work of the S.L.E. Lupus Foundation is very important.”

City Council Speaker Christine C. Quinn also recognized the Foundation’s success in raising awareness of lupus and personally thanked our Founder and co-Vice President Susan Golick for starting the organization.

“When I was diagnosed as a young woman in the 1970’s, no one knew much about lupus and we could not even pronounce the formal name of the disease – systemic lupus erythematosus,” explained Susan. “With few places to turn for help, my family formed the S.L.E. Lupus Foundation to provide resources and support to all those affected by lupus.”

Susan went on to express special thanks to Councilwoman Maria del Carmen Arroyo, Councilman Joel Rivera and Councilwoman Annabel Palma as particularly committed champions for the lupus community.

Several people from the audience approached Susan to express appreciation for her work and her courage in coping with such a difficult disease. Each knows someone with lupus.

But public awareness of the disease is still low. In accordance with the City Council Proclamation issued today, the S.L.E. Lupus Foundation is pounding the pavement throughout May to educate New Yorkers about lupus.

“We will not stop until every person you might stop on the street can answer the question ‘What is Lupus,’ Susan pledged.

Article source: http://www.lupusny.org/news/foundation-news/2013/05/22/new-york-city-council-proclaims-may-lupus-awareness-month

“Living Life Healthy with Lupus: Looking and Feeling Good” Event Launches Lupus Awareness Month 2013 in NYC

To kick off Lupus Awareness Month, the S.L.E. Lupus Foundation collaborated with the Hospital for Special Surgery’s (HSS) Lupus Support Programs to hold the 6th annual “Living Life Healthy with Lupus: Looking and Feeling Good” wellness event.

Many people with lupus brought along a family member or friend to enjoy a day focused on feeling better—inside and out. The free program offered complimentary demonstrations from makeup artists, massage therapists, hairstylists, and more.

Making the Most of Every Doctor’s Visit
The presentation “Talking with Your Doctor: What You Should Know” by Monica Richey, MSN, from the Lupus Center at HSS focused on preparing for each doctor’s visit and making every minute count by asking questions and making sure you don’t downplay or exaggerate your symptoms.

Did you know that on average Americans get 18 minutes with their doctors at a visit? To prepare for this visit Monica recommends making a list of all your symptoms and prioritizing them. Then review with your doctor why you are there and set an agenda. Plan to discuss 3 to 6 concerns per visit and tell the doctor your top 2 or 3 concerns. Make sure you tell your doctor about symptoms that are bothering you and review the course of action before you leave. If you don’t understand the doctor’s instructions, ask him/her to repeat them until you are clear.

Monica’s top three recommended questions:

• What is my main problem?
• What do I need to do?
• Why is it important for me to do this?

Avoiding Joint and Muscle Pain

Massage therapist Samantha Paige-Grueber offers these suggestions:

• Avoid gripping or holding tightly for long periods (or maybe not so long) of time as that can cause shoulder and or neck pain.  The muscles for your hands are in your arms.  When you hold or grip tightly those muscles tighten.  That tightness will extend up the entire arm into the shoulder and neck, causing pain.  If and when you can become aware of this pattern you can change it.  Simply, when you notice tightness in your arm, release whatever you are doing and shake out your hand and arm.  Think of your hand and arm becoming light and free from stress.  If you are carrying a somewhat heavy package, do not lock your elbows; carry the package using your entire arm.
• Try to get a massage at least once a month, as the benefits to your muscles are cumulative.  The Lupus Project was started in order to make massage affordable.  The Massage Therapy Resource Guide, available on the S.L.E. Lupus Foundation’s website, lists American Massage Therapy Association massage therapists who are open to offering massage therapy on a sliding scale based on income. Please take the reference guide or go online and look for a therapist.  Talk to them.  We are all here for you!

Looking Good Helps You Feel Good

Representatives from Dermablend and Mary Kay provided great information about makeup and skin care. Martha demonstrated how to use Dermablend products to cover blemishes, rashes and even tattoos. Mary Kay representatives Janet and Sharmaine talked with women about the importance of a good skin regimen – cleanse, moisturize and protect.

Also veterans of the event, Stacey Brown of Stacey and Co. and her colleagues provided new hairstyles and manicures for participants. Stacey’s tips for healthy hair and skin include keeping your hair moisturized in order to avoid dryness that leads to breakage and using sunscreen all year round regardless of your skin tone or texture. For women who choose to wear a wig Saskia demonstrated wigs from Andrew DiSimone.

Special thanks to our supporters:
American Massage Therapy Association
Andrew DiSimone Wigs
Dermablend Professional
Mary Kay Cosmetics
Stacey and Co.
J.J. Jackson, Manicurist

Article source: http://www.lupusny.org/news/foundation-news/2013/05/20/lupus-patients-pampered-free-wellness-day

“Skin Care, Weight Control, and Feeling Good with Lupus”

Lupus can not only affect how you feel physically but how you look – which in turn can affect how you feel emotionally. The Manhattan stop of the S.L.E. Lupus Foundation’s annual Hospital Tour focused on managing effects of lupus on your skin and weight.

Harlem Hospital Center’s Chief of Rheumatology Dr. Amanda Sammut discussed how lupus affects your skin and your weight and shared what she tells her patients for how to care for your skin. Registered dietician Sharon Isaac, MS. CDN talked about healthy eating with lupus. .

Here are highlights of the presentation for those who could not attend:

Common Skin Manifestations of Lupus

• The butterfly or malar rash is a sign of lupus but can sometimes be mistaken for sunburn. Sunblock can help prevent the rash.
• Discoid lupus causes lesions that can result in hair loss where the lesions occur.

Effects of Steroids on the Skin and What You Can Do

• Steroid use can result in acne, stretch marks or straie, skin thinning, purpura, and bruising.
• To help avoid or minimize acne, do not scrub aggressively and use water-based lotions, cosmetics and hair products. Look for cosmetics that are non-comedogenic (meaning it won’t clog pores and cause acne).
• Stretch marks or straie can be caused by rapid weight gain or weight loss. Try to avoid rapid weight gain or loss that can occur when going on or off steroids. In the early stages, try to keep stretch marks moist and see a dermatologist if you want to learn more about medications that can be used.

Tips on Protecting Your Skin

• Protect your skin daily with sunscreen.
• Use sunscreen with an SPF of 30 or higher and that contains avobenzene, titanium dioxide or zinc oxide. These products protect against both UVA and UVB rays, both of which are associated with active lupus.
• Wear sun protective clothing and wide-brimmed hats.
• Recognize that certain medications increase photosensitivity and be extra careful on the sun if you are on antibiotics, diuretics, anti-inflammatory drugs, or birth control pills.

Lupus Activity, Weight, Nutrition and Exercise

• Active lupus is associated with weight loss. However, many people with active lupus are treated with steroids which can increase your appetite and result in weight gain.
• Try to avoid weight gain — keep healthy foods in your house, keep a food diary to track what you eat, and keep hydrated with plenty of water.
• Suggestions on how to add fruits and vegetables to your diet include:

    -Eat fruit and vegetables throughout the day.
    -Add vegetables to soups, sandwiches and salads.
    -Use fruits to make smoothies.
    -Add fruit to cereal, yogurt and salads.
    -Choose fruits and vegetables that are fresh or frozen.

• To help eat healthily, follow the plate method – fill ½ your plate with fruits and vegetables, ¼ with whole grains, and the remaining ¼ with protein (lean meat or fish).
• To help keep your body strong and reduce stress, perform low impact exercises. And vary the exercises so you work different muscles.

Tips on Improving General Well-Being with Lupus

• Control your lupus
• Eat a healthy diet
• Exercise
• Practice good sleep hygiene
• Develop a good support system
• Manage stress, anxiety and depression
• Don’t smoke

Dr. Amanda Sammut is the Chief of Rheumatology at Harlem Hospital and an Assistant Clinical Professor of Medicine at Columbia University, College of Physicians and Surgeons. She graduated and completed medical school at Stony Brook University in Stony Brook, New York. She trained as a medicine resident at Long Island Jewish Hospital in New Hyde Park, NY and then completed a rheumatology fellowship at New York Presbyterian Hospital, Columbia University, NY. Dr. Sammut is interested in lupus, rheumatoid arthritis, education of medical practitioners and advancing the field of rheumatology.

Sharon Isaac, MS. CDN, attended Lehman College, C.U.N.Y and graduated with Bachelors of Science in clinical nutrition. She then pursued a Master’s degree in clinical Nutrition from New York Institute in 2000. She has been working as a clinical dietitian for Harlem Hospital for the past 10 years.

For more information -

You can find more information on lupus and your skin here.

Learn healthy eating tips for people with lupus here.

Next Stop on the 2013 Lupus Hospital Tour:

May 16 at New York Methodist Hospital, Brooklyn

“Lupus and the Effect of Medication” with Mona Pervil, MD “The NYC Poison Control Center: A Resource for Questions About your Medicines” with Luz Martinez

All programs are from 6pm to 8pm, include dinner, and are free. RSVP is required. Register online or call 212-685-4118 or email jrowshandel@lupusny.org and provide your name, phone number, and the number of people attending.

Article source: http://www.lupusny.org/news/foundation-news/2013/05/14/learn-about-lupus-manhattan-stop-2013-hospital-tour

Thousands learned about lupus as they streamed through the Crossroads of the World — NY’s busiest intersection in Times Square. In recognition of World Lupus Awareness Day a Flash Mob of volunteer dancers “made quite a scene” decked out in orange, the color that has symbolized the lupus movement since the S.L.E. Lupus Foundation over 40 years ago.

“Because lupus can mimic many diseases, it can go undiagnosed and untreated for years,” noted Margaret Dowd, Executive Director of the S.L.E. Lupus Foundation. “Prompt diagnosis must start with a public aware of the disease and alert to its common signs. Today we are shining a light on the disease to urge people to ask their healthcare provider if their symptoms could be lupus.”

Article source: http://www.lupusny.org/news/foundation-news/2013/05/10/lupus-makes-scene-times-square

NEW YORK, NY, May 10 – Affecting millions worldwide, lupus does not recognize national boundaries. For World Lupus Awareness Day 2013, the Lupus Research Institute (LRI) and the S.L.E. Lupus Foundation shine new light on lupus, addressing global issues impacting researchers, healthcare providers, and patients throughout the world.

Closing in on the Cause, Going for the Cure with First-Ever $1 Million Awards from Private Sector

Timing is everything — this World Lupus Awareness Day, the LRI invites scientists around the globe to take up a million dollar challenge: apply for $1 million Distinguished Innovator research awards to find the basic causes of lupus that can drive to a cure. The LRI initiated the Distinguished Innovator award program to marshal the world’s most brilliant scientific minds and cutting-edge technical expertise to answer the most critical questions in lupus. 

“The drive to discover the fundamental causes of lupus is a formidable charge, but essential and now within reach,” noted Margaret Dowd, LRI President and CEO. “Building on a decade of pivotal advances in lupus research, we are closing in on the cause and going for the cure. That is why we are raising the stakes by providing the first $1 million privately funded grants for scientific study in lupus.”

Sponsoring First International Nephritis Conference

The LRI continues its pursuit to prevent and treat lupus nephritis (kidney damage), one of the most common and serious complications of the disease. The LRI is sponsoring the launch on May 22 in New York City of the new international Lupus Nephritis Trial Network (LNTN). This global network of world-leading investigators was formed to derive standardized measurements for testing new medicines in the search for safer and more effective treatments for kidney damage caused by lupus.

Lighting up Lupus to Accelerate Diagnosis and Treatment

Article source: http://www.lupusny.org/news/foundation-news/2013/05/10/sle-lupus-foundation-and-lri-address-global-treatment-issues-world-l

The Lupus Foundation of America and lupus organizations around the globe are rallying together on May 10, World Lupus Day, to urge action and raise awareness of lupus, a mysterious and devastating disease that ravages different parts of the body. Lupus has no known cause and no known cure.  Watch and share this video about how lupus affects nearly five million people worldwide.

“World Lupus Day is a time when the worldwide lupus community comes together to shine a light one of the world’s most unpredictable, mysterious, and devastating diseases,” said Sandra C. Raymond , President and CEO. “Greater awareness will result in more resources and investment in lupus research efforts to find the causes of lupus and discover new safe, tolerable and effective lupus treatments.”

As part of the observance, the Lupus Foundation of America is urging individuals with lupus and their loved ones to share in their own words how lupus has affected their lives. They can submit their stories through the website, Lupus Voices Across America, at lupusvoices.org.   The public also can show their support and help solve the cruel mystery by signing a petition that asks Congress to fund more lupus research efforts. The petition is available online at lupus.org/petition.

SOURCE Lupus Foundation of America

Article source: http://www.news-medical.net/news/20130510/World-Lupus-Day-Lupus-organizations-to-rally-together-to-raise-awareness-of-lupus.aspx

The S.L.E. Lupus Foundation sounds the call for Life Without Lupus as our newest Board member Tuhina De O’Connor rings the Opening Bell this morning at the New York Stock Exchange on Wall Street. Joining Tuhina are just a few members of the lupus community that we have served for more than four decades.

Watch the video of the ceremony as it is being seen by 100 million people worldwide throughout the day!

The timing for this celebration could not be more appropriate during May Lupus Awareness Month. For 2013, the S.L.E. Lupus Foundation and our national Lupus Research Institute are spotlighting the many successes of our researchers, healthcare providers, patients and their family and friends who are making a major difference in lupus research and care throughout the city, the nation and the world.

Follow the advice of CNBC-TV newscaster Jim Cramer who urged his “Squawk on the Street” viewers watching this morning to contribute to the lupus cause — DONATE to the S.L.E. Lupus Foundation.

Article source: http://www.lupusny.org/news/foundation-news/2013/05/08/foundation-rings-new-york-stock-exchange-opening-bell-lupus-awarenes

S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701, New York, NY 10001
Phone: 212.685.4118   Fax: 212.545.1843
Lupus@LupusNY.org

Article source: http://www.lupusny.org/news/foundation-news/2013/05/01/may-declared-lupus-awareness-month-new-york-city-mayor-michael-r-blo

Unsurpassed Support Produces Breakthrough Discoveries Changing Patients’ Lives

NEW YORK, NY – May 1 – The Lupus Research Institute (LRI) announces a new $170 million milestone — delivering unprecedented novel research funding and unprecedented research results — changing the lives of lupus patients. A new analysis of completed LRI Novel Research grants demonstrates an 84 percent success rate as scientists prove cutting-edge hypotheses, publish results and win extended federal funding to advance original discoveries to clinical development.

“Over the last decade, the LRI produced many of the pivotal discoveries in lupus and autoimmunity,” said William Paul, MD, chair of the LRI Scientific Advisory Board. “The LRI’s approach effectively advances novel concepts to be furthered by subsequent large-scale funding from the National Institutes of Health (NIH), and to expand the possibilities for new drug development that can help patients.”

LRI-funded investigators are answering bold new questions and letting this science lead the way to how lupus is diagnosed, monitored and treated as well as how it will be cured with breakthroughs in:

• Predicting flare. Two new lab tests to predict lupus flare. By detecting the earliest signs of an upsurge in disease activity the tests are designed to improve disease management and accelerate the testing of new drugs in clinical trials. Researchers: Mary K. Crow, MD and Emily Baechler Gillespie, PhD
• Predicting heart risk. For the first time clinical research showed that a blood test for homocysteine identifies lupus patients most at risk for cardiovascular disease. Doctors now use the test to guide preventative treatment and reduce the chance of life-threatening cardiac events. Researcher:Joan Von Feldt, MD
• Discovering how lupus attacks the brain. Researchers uncovered how the lupus immune system attacks the central nervous system (CNS), leading to current work on a new targeted treatment for neurological and psychological complications of lupus. Researcher: Betty Diamond, MD
• Discovering how lupus harms the heart. A chemically altered form of ‘good’ cholesterol was found to contribute to circulatory system damage in lupus. This discovery led to new ways to identify and treat patients at risk of heart disease. Researcher: Bevra Hahn, MD
• Transforming kidney diagnosis. Researchers devised new non-invasive tests to diagnose and guide treatment of lupus kidney disease as alternatives to surgical kidney biopsies. Researchers: Chandra Mohan, MD, PhD;Chaim Putterman, MD; Joshua Thurman, MD
• Discovering new genes. Genetic breakthroughs uncovered new culprits in lupus – the Toll-like receptors. Drugs that inhibit these proteins are soon to be tested in lupus patients. Researchers: Silvia Bolland, PhD and Ian R. Rifkin, MD, PhD
• Smarter drug delivery. Using innovative nanotechnology to deliver drug doses directly to disease-causing cells promises to make existing lupus treatments safer and more effective. Researcher: Tarek Fahmy, PhD

Results like these take both private and public funding. Of every dollar contributed to the LRI, 95 cents goes directly to its research programs, and every one of these dollars has multiplied more than four-fold. Over the past 12 years, the LRI has awarded and funded 140 innovative research grants. That investment of $40 million has turned into more than $170 million as LRI researchers won unmatched levels of follow-on funding from the NIH and other sources to extend the development of their innovative work.

“This Lupus Awareness Month, we spotlight our scientists’ success because it is their talent, creativity and insight that is turning patients’ hope into reality,” said Margaret Dowd, President and CEO.  “This is a time to recognize and celebrate the power of scientific innovation as the clear path to transforming the outcomes for lupus and autoimmune disease.”

Article source: http://www.lupusny.org/news/foundation-news/2013/05/01/lupus-research-institute-tops-170-million-novel-research-lupus