Lupus Foundation of America

Philadelphia Tri-State Chapter

E-Newsletter

Summer Update


In This Issue
Annual Living Well with Lupus Symposium
Social Security and Disability and Lupus
20th Annual Lupus Loop
9th Annual Bridge Tournament
Current Research

Stay in Touch 

Join Our Mailing List

Quick Links

Support Groups 

Upcoming Meetings

 

Delaware

  
New Castle County:  

Newark (7-8pm)

Christiana Hospital

4755 Ogletown Stanton Rd. 

Room 1001 

Wednesday, August 31

Wednesday, Sept. 28

 

Wilmington

(9:30-10:30am)

Aldersgate United Methodist 2313 Concord Pike 

Saturday, August 13

Saturday, September 10

 

Kent County:

 Dover

(6-8pm)

Bayhealth Medical Center

640 S State Street

Conference Room GF 3&4 

Tuesday, September 6

 

Pennsylvania

Delaware County:
Media
(10:30am-12:30pm)
Riddle Hospital
Outpatient Pavilion Lobby
1068 Baltimore Pike 

Saturday, September 3

 

Lancaster County:

 Lancaster

(10:30am-12:30pm) 

Lancaster General Health Campus, 2nd Floor

Conference Room 2

2100 Harrisburg Pike

Saturday, September 18

 

Montgomery County:

 Abington

(7:00-9:00pm) 

Abington Memorial Hospital

Lenfest Building, P&G Room

Keith & Old York Roads

Wednesday, August 10

Wednesday, Sept. 18

 

Bala Cynwyd

(12:00-2:00pm)

Bala Cynwyd Library

Meeting Room, 2nd Floor

131 Old Lancaster Road 

Saturday, September 10

 

Collegeville

(7:00-8:30pm)

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

(7:30-8:30pm) 

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
Milford, DE

Community Events 

 

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!

 

 

Stay Connected! 

Sta y connected with us via
Facebook & Twitter!



  
Summer 2011
Greetings!

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,

 

-Annette  

CEO 

 


Annette Myarick

 

Annual Living Well with Lupus Symposium

Featuring Keynote Presentation: A Spoonful of Hope

Speaker:  Christine Miserandino

Living Well with Lupus 

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 

9:00am-3:30pm

Register online today, or contact us for more information or to request a program brochure.
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
1:00-2:00pm
Presenter: Sheri R. Abrams, Attorney at Law

Register Here

The 20th Annual Lupus Loop

Lupus Loop Logo

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.  

Research Update

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.
Read more>>

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.
Read more>>

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.
Read more>>

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.