Lupus Society of Illinois 

eChronicle  September 2015
In This Issue
Quick Links
Upcoming Events

September 12
Lupus & the Musculoskeletal System Educational Coffee

September 27
Chicago Illinois Lupus Walk

September 28
Aware For All - Educational Event

October 11
Bank of America
Chicago Marathon

October 31
Bowl-O-Ween Junior Board Fundraiser

November 12
Teleconference: Resources for the Lupus Community

January 30
Empowering Lupus Patients Educational Seminar

March 10
Sara Sullivan

Former board member and lupus activist passed away on August 15, 2015 at the age of 52.

We are grateful for her contributions to the lupus community and her battle in the fight against lupus.

Read More:
Windy City Times
Chicago Tribune
2015 Illinois Lupus Walks!


Don't miss one of the largest and most inspiring lupus events of the year!

Join us at the Chicago Walk!

Chicago (Lincoln Park) - September 27, 2015

Find out MORE!
Talk About Dedication!
 
Lupus supporters Polly Parchem and Lloyd Berry are so committed to the Chicago Illinois Lupus Walk and Fun Run they are making it a part of their wedding celebration!
 
On Saturday, September 26th , 2015, Polly and Lloyd will be married and on Sunday, September 27th they'll be joined by family and friends at the 15th Annual Chicago Illinois Lupus Walk and Fun Run!
 
"We invited our family and friends to join us at the Walk on Sunday - we even included a note about the walk with our invitations" says Polly, who has lupus. "The LSI's Chicago Lupus Walk is a fun event and a great way to continue the wedding festivities.  This year, we'll be walking together as one family!" 
 
Polly shared some photos from last year's walk.  Don't forget to look for Polly's team, Fleck Flock, on Walk Day!
 
We're so glad Polly and Lloyd chose to continue their personal celebration with the entire lupus community!
Way to Go Rockford!
  
 
This year, the Rockford Lupus Support Group hosted its annual awareness event at the Nicholas Conservatory and Gardens Riverfront at North 2nd Street in Rockford, IL On August 8, 2015. 30-40 people joined in the efforts to raise awareness about lupus in the Rockford area. The Support Group works hard in Rockford and many of the members were on hand to share their stories.
 
Members Shaunda Anderson and member Felicia Yates shared personal recollections. Felicia and her family walked to support her son Ernest who lives with lupus and couldn't walk due to lupus complications.
 
Thanks to Felicia for sharing her photos from the event and for making the event extra fashionable with her purple hair and accessories!
Bank of America
Chicago Marathon

Running the
Bank of America
Chicago Marathon?

Want to run for a reason?

Join Lupus Charity Runners!

Contact Brianna Svec.


CFC #: 21759
A Message from the President & CEO

After 15 years, the Chicago Illinois Lupus Walk is our oldest and largest.  Over time, the walk has become an annual tradition for many families and we feel so fortunate to be a part of your lives.

One example is Polly Parchem, a lupus survivor, and her fiancĂ© Lloyd Berry who are so committed to the cause that she is including the Chicago Lupus Walk as part of her wedding weekend!  You can read more about their story in this edition of the eChronicle.

Families have also hosted reunions to coincide during the Chicago Walk Weekend - and we are so grateful to be so important to you.

To me, and everyone at the LSI, making the walk a part of your life makes complete sense - because to us, the lupus community is really a family and the walks are an opportunity to deepen relationships among those with whom you already share a bond.

At the LSI's Illinois Lupus Walks, participants don't have to worry about explaining lupus and instead are free to enjoy all the event has to offer - like the Kid's Tent, Raffle Tent, highly competitive Team T-shirt Contest or just enjoy the fun atmosphere.  

We hope that you'll be able to attend the Chicago Illinois Lupus Walk on Sunday, September 27th and share in that experience.

Funds raised through the Illinois Lupus Walks funds our programs and services - like our educational events.  The LSI has been announcing the upcoming educational events and we have a save the date for our largest educational seminar of  the year.

The Empowering Lupus Patients Educational Seminar will be held on Saturday, January 30th.  This event is designed to provide participants with expert information on lupus related topics to help you live your life as empowered as possible.

Our other upcoming events are:

*    THIS SATURDAY - Lupus & The Musculoskeletal System 
*    11/12/15 - Resources for the Lupus Community Educational Teleconference
*    1/30/15 - Empowering Lupus Patients Educational Seminar
*    3/10/16 - Nutrition and Lupus Educational Teleconference

This year, the LSI is partnering with the Center for Information and Study on Clinical Research Participation (CISCRP)
on AWARE for ALL on Monday, September 28, 2015, an educational program free and open to the public for the purpose of providing information to help people make informed decisions about clinical research participation.  

Don't miss this unique event!

Finally, I wanted to congratulate our Lupus Charity Runners who are participating in the Bank of America Chicago Marathon in October.  Our team of 25 runners has already raised over $25,000 - well on their way to their $50,000 goal.

Thank you for making lupus a priority.
 
Together we make a difference.
 
Charles Brummell


Donations Making A Difference
Funds raised through the Illinois Lupus Walks and general donations are used to achieve LSI's mission in
Illinois.  T hese are just some of the examples of how LSI turns donation dollars into service to the lupus community.
News You Can Use 
Men with lupus

The Lupus Community Navigator received a call from a man with lupus looking for support.

Ninety percent of people with lupus are women - which means ten percent of people with lupus are men.

LSI does not have a support group specifically for men but through the Individual Peer Support program, you can find other men with lupus to talk to and find support.  Because lupus affects more than the individual living with the disease, the Individual Peer Support program is available to family members as well.  

The Chicago Illinois Lupus Walk has a tent dedicated to men with lupus.  The tent is the result of the hard work of Lisa Klaslo and her team Loop Troop.  The purpose of the tent is to raise awareness about men with lupus.  Check out Loop Troop's team page here.

Lupus develops and is treated in the same manner as lupus in women.  There is no known reason as to why lupus develops more frequently in women than in men.
Navigator Corner 
Support when you need it

The Lupus Society of Illinois offers support on virtually any lupus related topics.  Over the last few weeks, LSI has received questions on everything from support groups, medications and physician referrals. 

The Lupus Community Navigator has received several calls from individuals either new to lupus or just finding out about the Lupus Society of Illinois.

For everyone new to the organization, LSI sends an Inquiry Packet.  Included in the Inquiry Packet is a welcome document and information on lupus and the programs and services of the Lupus Society of Illinois.

Often times, a conversation with the individual will lead to a program or service the LSI offers that the individual can benefit from.

The Living with Lupus Financial Assistance Grant is one program the lupus community is interested in.  The Individual Peer Support program, Support Groups and physician referrals are also widely used.

If you would like to receive an Inquiry Packet, please let us know by emailing Taurean@lupusil.org or call 312-542-0002.

If you have any lupus-related questions please contact the LSI's Navigator for assistance or call 312-542-0002.
Impact: Lupus 
Making A Difference

Recently, the LSI was contacted by a student in need of materials for a school project.  After talking with the student, LSI was able to provide materials to help this student prepare her class work while educating people about lupus.

LSI is always able to provide factual educational materials for school projects or other awareness opportunities.  LSI can even customize educational materials for specific audiences - like children.

Below is the student's thank you letter upon receiving the materials:

I did receive all of the information you sent and I cannot thank you enough!!   You went above and beyond!!! I am slowly starting to put together my research paper and collect remaining poster materials! I am hoping it will be a strong presentation! Thank you again so much for all that you did!

If you are looking for factual lupus information, please contact the LSI at 312-542-0002 or email info@lupusil.org.
Educational Events

Presented by Dr. Meenakshi Jolly
Saturday, September 12, 2015 - Naperville, IL
9:30am  - Registration/Coffee
10:00am - Presentation begins

Over 50% of people with lupus include joint pain as one of their first symptoms. Over 90% of people living with lupus will experience joint and/or muscle pain.

Join us for this seminar detailing the connection between lupus and the musculoskeletal system.

For more information and to register click here.

Aware for All - Clinical Trials Educational Event
Monday, September 28, 2015
5:00 PM to 8:00 PM
Loyola University Chicago
2160 S. First Ave.
Maywood, IL 60153

Resources for the Lupus Community Teleconference
Presented by the Lupus Society of Illinois
Thursday, November 12, 2015 | 6:30pm 

Nutrition and Lupus Teleconference

Presented by
Marla Brodsky, RD, LD, BCIM
Thursday, March 10, 2016 | 6:30pm 
 
Empowering Lupus Patients Educational Event
Saturday, January 30, 2015
9:30- Registration
10:00-11:00-Presentation 1 (TBD)
11:15-12:15-Presentation 2  (TBD)
12:30-1:30-Presentation 3 (TBD)

WAC L203, Butler Reception Room
Saint Xavier University
3700 West 103rd St.
Chicago, IL 60655 
Archived Educational Teleconferences 

LSI archives educational teleconferneces on our website. Download the Disability & Lupus presentation and the Lupus & Bone Health teleconference here.

LSI's next teleconference is scheduled for Thursday, November 12, 2015.  Register today! 
Invitation  
to become a member of The National Lupus Initiative

A collaborative project of Northwestern University Feinberg School of Medicine and the Illinois Public Health Association Division of Health Equity.

How I can Participate:
  • Join the Chicago Latino/Hispanic or African American Coalition - a coalition designed to improve communication in the Latino/Hispanic or African American communities, models of care and additional support systems in an effort to provide culturally sound awareness opportunities.
  • Participate in the MONARCAS training, a class that provides unique, culturally competent, evidence-based tools  to educate communities, strategies for outreach and ultimately navigate patients with lupus to factual, relevant materials.
  • Engage new community organizations in the safety-net of lupus patients.
  • Involve medical staff in new patient-provider models of care and the latest advances in lupus treatment.
  • Become a Popular Leader/MONARCA and distribute information about lupus to your relatives and social networks.
  • Listen to our Webinars educating you on how to promote lupus awareness in your community.
  • Contribute your personal stories to our Websites - where others can benefit from your experiences.
  • Learn about community-research and how to apply these principles to our lupus project and other related chronic diseases.
  • Be part of our focus groups designed to improve our culturally specific awareness materials
To join contact Karen Mancera-Curevas at (312) 504-8290.  
Our Mission
LSI promotes lupus awareness and complements the work of health care professionals by providing personalized resources for the lupus community while supporting research.
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