Stay in Touch
New Castle County:
4755 Ogletown Stanton Rd.
Wednesday, August 31
Wednesday, Sept. 28
Aldersgate United Methodist 2313 Concord Pike
Saturday, August 13
Saturday, September 10
Bayhealth Medical Center
640 S State Street
Conference Room GF 3&4
Tuesday, September 6
Outpatient Pavilion Lobby
1068 Baltimore Pike
Saturday, September 3
Lancaster General Health Campus, 2nd Floor
Conference Room 2
2100 Harrisburg Pike
Saturday, September 18
Abington Memorial Hospital
Lenfest Building, P&G Room
Keith & Old York Roads
Wednesday, August 10
Wednesday, Sept. 18
Bala Cynwyd Library
Meeting Room, 2nd Floor
131 Old Lancaster Road
Saturday, September 10
St. Eleanor's Church
Rectory Meeting Room
647 Locust Street
Wednesday, August 10
Wednesday, August 24
Wednesday, Sept. 14
Wednesday, Sept. 28
Living Well with Lupus Telephonic Support Group
Available via toll-free #
Thursday, August 11
Thursday, September 8
If you are interested in starting a support group in your area, click here to contact us!
|Living Your Best Life|
Mind, Body, and Soul
|On Wednesday, August 24, 2011, we will be having a program in Milford, Delaware highlighting the journeys of some amazing volunteers. This panel of individuals with lupus will share their thoughts and experiences with lupus including practical tips and strategies for living well with lupus. For more information about this event, and to reserve your seat please feel free to contact us.|
Wednesday, August 24
6:30 - 7:30 pm
Milford Public Library
11 SE Front Street
We are always looking to get involved with events in the community! If you know of a health-related event in your area, or are thinking of running your own third party event to help in the fight against lupus, please Contact Us now!
I can hardly believe it is mid-summer already! I hope this email finds you and your family well and enjoying all that summer brings...fun activities, family outings and vacations, etc. As always, there has been so much going on at the Chapter office. Be sure to read through this issue to keep updated on our exciting upcoming programs and events!
Earlier this year we celebrated a milestone with the FDA's approval of the first treatment approved for lupus in more than 52 years, which is also the first drug ever approved that was specifically developed to treat the disease. As we move into this new era of hope, we invite you to join us in celebrating another milestone, the 20th Anniversary Lupus Loop 5K Run and 2.5 Mile Walk for Lupus Now - the LFA's oldest walk in the country. Please visit lupusloop.org to sign up today!
I am also excited to invite you to our Annual Living Well with Lupus Symposium scheduled for Saturday, October 1st. Christine Miserandino will present A Spoonful of Hope! Many of you may know Christine from reading her Spoon Theory or her online magazine/blog,
butyoudontlooksick.com, which focuses on living life to the fullest despite any disability, invisible disease or chronic pain.
Enjoy the rest of your summer and keep cool! We are here so drop us a postcard from your travels and keep in touch on Facebook and Twitter!
Warmest regards and wishing you good health,
Annual Living Well with Lupus Symposium
Featuring Keynote Presentation: A Spoonful of Hope
Speaker: Christine Miserandino
Saturday, October 1, 2011
The 11th Annual Living Well with Lupus Symposium brings together individuals living with lupus, their loved ones, interested health professionals, and a panel of experts to share the latest information to help people live well - or better - with lupus.
Additional features of the day will include exhibitors displaying information about their products, services and resources and keynote speaker
Christine Miserandino, author of The Spoon Theory
and founder of www.butyoudontlooksick.com.
October 1, 2011
Springfield Township High School
1801 East Paper Mill Road, Erdinheim, PA
|Social Security and Disability and Lupus|
Learn from the Experts Teleconference Series
We are pleased to continue with our series of educational teleconferences. Previous segments of the series have all been based on a variety of topics designed to link you with important information about living with lupus. A teleconference is an opportunity to learn new information from the comfort and privacy of home by calling into a designated number to hear an interactive presentation. Each teleconference lasts just one hour and is accessible via a toll-free number
Saturday, September 17, 2011
Presenter: Sheri R. Abrams, Attorney at Law
The 20th Annual Lupus Loop
The Loop has launched!
The 20th Annual Lupus Loop 5K Run and 2.5 Mile Walk for Lupus Now
® is a part of a nation-wide series of walks/events that raise awareness and funds to fight lupus. Walk for Lupus Now
® is the signature event of the Lupus Foundation of America, Inc. On Sunday, October 30, 2011, the LFA's oldest walk/run event in the country will take place in Fairmount Park in Philadelphia, PA. Join the 53 other teams in the fight against lupus! Adult Early Bird Registration is just $20, until October 19th, when registration goes up to $25, and registration for children under 12 is $10 at all times.
You also have the option of waiving your registration fee by pledging to raise at least $100 and receiving our 20th Annual Lupus Loop
t-shirt! Raising $500 gets you a sweatshirt, and $1000 lands you in the Circle of Friends honor roll.
For more information, and to register for the event, please visit the event website at www.lupusloop.org
|9th Annual Bridge Tournament for Lupus|
Monday, September 26, 2011
The 9th Annual Bridge Tournament for Lupus will be taking place at Green Valley Country Club in Lafayette Hill, PA at 10:30am. The day will consist of a delicious luncheon, sanctioned bridge, and other table games to benefit the Lupus Foundation of America, Philadelphia Tri-State Chapter.
Register online today or contact us to learn more about our Bridge Tournament.
Clinical Trial Announcement
As part of the LFA's efforts to Bring Down the Barriers to discovery of more effective and tolerable treatments for lupus, the LFA is working through its Center for Clinical Trials Education and Lupus Research Registry to distribute information about clinical research studies currently seeking volunteers. As part of the LFA, Philadelphia Tri-State Chapter mission, we want to inform you of opportunities to learn more about clinical research participation and specific studies seeking participants in our community.
Physicians in our area are currently seeking volunteers to participate in a new clinical research study. The EMBODY Program is testing the safety and effectiveness of an investigational study drug. To find out more information, including eligibility requirements for volunteer participants, go to the study web site, www.EMBODYprogram.com, or LFA's CCTE web site at http://www.lupus.org/clinicaltrials/study-spotlight.html.
Standards for Determining Lupus Kidney Flares
Experts generally agree that a common symptom of lupus nephritis, or inflammation of the kidneys, is excessive protein in the urine. Research suggests, however, that the current standards for how much protein in the urine is indicative of lupus kidney flares may be set too low or too high.
Heart Disease and Depression
Both heart disease and depression are common in people with lupus, and it is unsure whether or not one may trigger the other. Understanding the factors that contribute to depression may help to prevent and treat depression in individuals with lupus.
Lupus and Neuropsychiatric Disease
The occurrence of neuropsychiatric disease is associated with reduced self-reported quality of life in individuals with lupus. Researchers are attempting to validate standardized measures of health-related quality of life associated with neuropsychiatric events by examining changes associated with clinical outcomes of these events in people with lupus over a course of time.
LFA Seeks 2011 Young Investigator Prize and Hess Award Nominations
The Mary Betty Stevens, M.D. Young Investigator Prize recognizes the exceptional achievements of an investigator in the early part of their independent career in lupus research. The Evelyn V. Hess, M.D. Award recognizes a clinical or basic researcher whose body of research has significantly advanced understanding of the pathophysiology, etiology, epidemology, diagnosis, or treatment of lupus. The deadline for nominations for both awards is August 19, 2011 at 5:00pm. Visit the links above for nominations guidelines.