Lupus Foundation of America, Philadelphia Tri-State Chapter
January 2011

Greetings!
 

Happy New Year to you!  Let's build on our momentum from 2010 make it a great one together!

 

Thanks to your continued support, we continue to move towards a new era of hope and optimism in lupus research, treatment and awareness.  Read about our Top 10 Highlights from 2010.

 

We are busy at the Chapter office putting the finishing touches on our spring program schedule.  Details will follow in our next issue.  

 

In the meantime, stay connected with us through Facebook and Twitter, or join us for our monthly Living Well with Lupus Chat, held the 2nd Thursday of each month from 7:30 pm - 8:30 pm.  (Details are listed below.)

 

Please consider joining us for Advocacy Day on Tuesday, March 1, 2011 in Washington, D.C.  We will host a bus of advocates from PA, southern NJ and DE.  Visit our website for all the details and to reserve your seat.     

Sincerely,


Annette Myarick
CEO
Lupus Foundation of America,
Philadelphia Tri-State Chapter
Donate Online Now
The Lupus Foundation of America (LFA), Philadelphia Tri-State Chapter relies on your tax deductible contributions to advance vital research to find the causes and cure for lupus, to educate health care professionals about developments in diagnosis and treatment, and to provide support to individuals affected by lupus.



IN THIS ISSUE
Donate Now
Research
Programs and Events
Support
Services
About Lupus
Volunteer
Join LFA
LFA Achieves International Consensus on Definition of a Lupus Flare
 
LFA Flare DefinitionThe Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development of Lupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.

The consensus definition is: A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.
 

Read the rest of this article.
 

Research
Research Updates from the LFA

Research

Belimumab Allows For Reduction in Steroid Use for People with Lupus
One way to test whether a new treatment for lupus is effective is to see whether it allows people to reduce the amount of steroids they are taking. In this study, the researchers hoped to learn whether treatment with belimumab could reduce the use of steroids in people with active lupus.
Read more >>

CellCept® Is Superior to Azathioprine in Treatment of Lupus Nephritis
There are a number of treatments used for lupus nephritis, but none of them are approved by the U.S. Food and Drug Administration (FDA). This is because the FDA requires a treatment to demonstrate that it is superior to placebo or standard of care before it can be approved. It has been hard to figure out how to design clinical trials for nephritis that allow all the patients to receive acceptable standard of care treatments because the standard of care for this more serious type of lupus flare is very aggressive. In this study, the researchers hoped to compare the efficacy and safety of CellCept® and azathioprine as maintenance therapy for lupus patients who had responded well to a six-month, initial phase of treatment.
Read more>>

Epratuzumab is Safe and Effective for Treatment of Lupus in Phase II Trials
Epratuzumab is an investigational agent for the treatment of lupus. It is an antibody that binds to a protein called CD22 on B cells, which are white blood cells known to be hyperactive in many people with lupus. The researchers hoped to learn whether epratuzumab could be a safe and effective treatment for people with moderate-to-severe lupus. They also wanted to find the best way to give the treatment (which dose and how often to give it) to get the best possible effects.
Read more>>
 


Lupus Educational Teleconference Series

Topics and Dates TBA

National Advocacy Day
Tuesday, March 1, 2011

Washington, D.C.
Click here for more information

National Lupus Awareness Month
Events for May TBA

World Lupus Day
Tuesday, May 10, 2011
3rd Annual Walk for Lupus Now






Walk for Lup
us Now South Jersey
Sunday, May 15, 2011
Ocean City, NJ
Visit walkforlupusnowsouthjersey.org for more information

Walk for Lupus Now Delaware
Sunday, June 5, 2011
Wilmington, DE
Visit walkforlupusnowdelaware.org for more information

Lupus Links Golf Tournament
Monday, July 18, 2011
Email the Chapter office to join the Lupus Links mailing list

Annual Living Well with Lupus Seminar
Saturday, October 1, 2011
Email the Chapter office to join the Living Well with Lupus Seminar mailing list

20th Annual Lupus Loop 5K Run and 2 Mile Walk for Lupus Now
Sunday, October 30, 2011
Fairmount Park, Philadelphia, PA
Visit lupusloop.org for photos from the 19th Annual Lupus Loop

 

Advocacy Day

Support & Services
Support Group Updates

Living Well With Lupus Chat
A Telephonic Support Group
2nd Thursday of every month
7:30-8:30pm
Next meeting: Thursday, January 13th
Email or call the chapter office at 855-517-5070 for more information.

The Lankenau Hospital Support Group will now meet at the Bala Cynwyd Library. 2nd Saturday of every month from 12-2pm.

The Abington Support Group will host a luncheon at the Willow Grove Super Giant on February 5th. Please contact the chapter office for more information, email or call 866-517-5070.

To view a full list of Support Groups, please visit the Support & Services page on lupustristate.org.
 

The Lupus Foundation of America, Philadelphia Tri-State Chapter is proud to be your source of information and education about lupus, and is pleased to provide referrals to area resources as well as the following services:

Contact Us for more information about education, support and other services.


About Lupus
 
Researchers Discuss Quality of Life Measurements
 
 
Physicians researching quality of life (QOL) measures in people living with lupus presented their findings at the 9th International Congress on Lupus. Click the links below to view videos of the physicians discussing their studies in their own words.
 

Health Related Quality of Life Measures in Children with Lupus
L. Nandini Moorthy, MD, MS, FAAP
Chief of Pediatric Rheumatology
Robert Wood Johnson Medical School, New Brunswick New Jersey

Studies Regarding Health Related Quality of Life for People with Lupus
Meenakshi Jolly, MD
Director, Lupus Clinic
Rush University Medical Center, Chicago, Illinois

Wondering how lupus may affect your life? Read more about Living With Lupus on lupus.org.

Sleep Easy - Tips for a Good Night's Sleep

 
Sleep EasySet a schedule. Go to bed at a set time each night and get up at the same time each morning.
Exercise. Try to exercise 20-30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bed may interfere with sleep.
Avoid caffeine, nicotine, and alcohol. Cafferine acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.
Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall asleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.
Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body's internal biological clock reset itself each day.
Don't lie in bed awake. If you can't get to sleep, don't just lie in bed. Get out of bed and so something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, of if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Most sleep disorders can be treated effectively, so you can finally get that good night's sleep that you need.

Read the full article - Sleep Easy: Why Sleep is Important When You Have Lupus - on lupus.org.

15 Questions with Dr. Mary Beth Rhomberg - How Lupus Can Affect the Eyes
Dr. Mary Beth Rhomberg
Dr. Mary Beth Rhomberg graduated from the University of Missouri - St. Louis College of Optometry in 1997. She completed an optometric residency in Family Practice in 1998, also from the UMSL College of Optometry. Currently, Dr. Rhomberg is an Associate Director of the American Optometric Associatrion and an Adjunct Assistant Professor at UMSL College of Optometry.

Dr. Rhomberg answers questions on plaquenil, macular degeneration, dry eye, prednisone, and more.  Read the question and answer session by clicking here. Read more about how lupus can affect the eyes on lupus.org.

Volunteer
We need dedicated people to help with Lupus Foundation of America projects. Volunteers need to be at least 14 years of age. Please download and complete the Volunteer Application Form, and submit to our office in order to register to be a volunteer. Please click on the Volunteer Today tab on lupustristate.org for more information. Thank you for your interest in volunteering with the LFA Philadelphia Tri-State Chapter.

Join LFA
Your subscription to the Lupus Now magazine is included as a benefit of membership in the Lupus Foundation of America, Philadelphia Tri-State Chapter. In addition to receiving this great magazine, you will receive our local newsletter, Lupus Line, and you will be supporting many local programs and services for those affected by lupus along with local research efforts. Become a member or renew your membership online today!

Click Contact Us above, and complete the online form to request information or to ask a question. Your inquiry will be responded to promptly. Our chapter office staff is available Monday - Friday from 9am - 5pm to answer questions or to respond to requests for information, please contact 215-517-5070 or 302-622-8700 for South Jersey or Delaware.
About Us
The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. LFA is a grassroots, volunteer-driven organization. The Lupus Foundation of America Philadelphia Tri-State Chapter serves southeastern Pennsylvania, Delaware, and southern New Jersey.
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