Lupus Society of Illinois 

eChronicle June 2016
 We're Moving! 
LSI offices are moving at the end of June!  Effective June 25th, LSI will be located at: 
411 S. Wells St., Suite 710 | Chicago, IL 60607 
Our phone, email and website address will remain the same!  

In This Issue
Quick Links
Upcoming Events

Lupus Awareness Month
 
Thousands were impacted by LSI's Lupus Awareness Month efforts!

Some highlights include:

Karen Brown's interview on WSIL TV in Southern Illinois.

Third Annual Stephanie Wetzel Golf Outing on 5/14 raised $5,500 for the LSI's mission!

Lupus community attends Windy City Live taping and get a World Lupus Day shout out!

Dr. Rosalind Ramsey Goldman's office hosts a live Twitter Chat to celebrate World Lupus Day!

Volunteer and lupus advocate Patricia Canessa gets the BCBS building in Chicago to "Go Purple" on 5/24. 
NBC Channel 5's Make A Difference Campaign
See LSI Board Vice Chair Erica Collins, PhD and Vice President Mary Dollear talk about lupus on NBC Channel 5's Make a Difference Campaign 
Make a Difference!
Run the Bank of America
Chicago Marathon
for Lupus Charity Runners!
October 9, 2016

Lupus Charity Runners will again participate in the
Bank of America
Chicago Marathon!

If you would like to join Lupus Charity Runners for this or any other race, contact Mary Dollear at mary@lupusil.org or call 312-648-6053.

Invitation  

You're Invited!

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.
 
To join contact Karen Mancera-Curevas at (312) 503-0251. 

MORE 
CFC #: 21759
Another Lupus Awareness Month came to a close last week and we couldn't be happier with the results!
 
Together, we sent out over 5,000 educational materials to participants throughout Illinois reaching over 1,000 people. Hundreds more downloaded information from our website, liked our posts on social media and walked at the Illinois Lupus Walks.
 
Lupus Facts of the Day and other posts were a big hit on Facebook seeing over 5,100 likes in May alone and we now have over 2,000 likes to our organization page!
 
The Northern and Southern Suburbs Lupus Walks were a huge success! Together those events have already brought in over $90,000 towards our mission!
 
We still have two more Illinois Lupus Walks - the Western Suburbs in Naperville on August 13th and Chicago in Lincoln Park on September 18th. Walks are fundraisers, awareness builders and a great way to network in the lupus community! We hope to see you there!
 
Funds raised through the Illinois Lupus Walks enable the LSI to continue to provide programs and services at no cost to participants. LSI absorbs all costs for our sponsored educational events - like the event coming up in Naperville on July 30, 2016 and the teleconference on September 22, 2016
Programs like the Living with Lupus Grant and the Lupus Navigator program are offered at no cost as well.
 
You know us. LSI is here to meet the needs of Illinois' lupus community as we have been since 1973.
 
One way LSI has worked to meet the needs of Illinois' lupus community is to partner with organizations or physicians on research opportunities.  
 
That was the case with the African Americans with Lupus Focus Group LSI recruited participants for. The opportunity came about through a grant received by Dr. Rosalind Ramsey Goldman. The proposal, Addressing Lupus Health Disparities Adapting Culturally-Competent Community-Based Education Models Through Local and National Collaborative Partnerships: The MONARCAS Program, was an opportunity to target a specific at-risk community for lupus awareness.
 
When an opportunity arises to partner with an organization to benefit the lupus community - even a targeted population within the lupus community - LSI will take advantage of that opportunity.

We are committed to serving the needs of the lupus community. 
 
For more information on the focus groups and LSI's role in the study, please contact Mary Dollear at mary@lupusil.org or call her at 312-542-0002.
 
Together we make a difference.
 
Charles Brummell
Meet the Southern Suburbs Walk Ambassador: Meaghan Fox! 

Every morning we wake up without knowing what the day is going to bring. We open our eyes and pour over our phones, newspapers, work for the day; most of us not giving much thought to simple things like walking to the bathroom or making the bed. But that isn't the reality of someone living with a chronic pain or illness.

It isn't the reality for 18-year-old Meaghan Fox, who has lived with lupus her entire life. Her "normal" is something altogether different, and her attitude on how to live with it is just as unique.


As an infant, Meaghan's body already showed signs of the disease. Unable to articulate her pain, she cried incessantly and was unable to keep down any food she was given. Her parents - her mother, an Occupational Therapist - were convinced she had lupus, which her doctors agreed. But, afraid to give a small child such a serious label, they waited until much later to confirm it.

MORE
Father's With Lupus: A Son's Story
By Stephen Hinkel

Before I was born, my father had lupus so this was all I knew as a son until he passed away.

Two of his biggest frustrations:  the average person assuming it was a "female-only" disease and the constant stares he got while wearing "protection" (hat, sunglasses, long sleeves, and jeans) outdoors in South Florida.

I can remember accompanying him to the doctors and hospitals for treatments and surgeries many times only to see him return home and deal with bouts of pain and chronic fatigue.

MORE
Congratulations to Brianna Svec!
Brianna is leaving for a new position

Brianna Svec, Special Events Coordinator for the LSI, is leaving for a new job at UIC!

We thank Brianna for all of her hard work for the LSI and on behalf of the Illinois lupus community.

We wish Brianna well in her new position!
Navigator Corner
Support when you need it.

The LSI Navigator received a call from a man with lupus who was ready to get involved and help others with lupus.

The Living Well With Lupus Story Sharing Project is a great way to use your personal story to help others. 

Stories are reviewed by LSI and posted to LSI's website here.  Storytellers can include their personal contact information, however this is not required.

To help participants to tell their stories, LSI created a survey  Free form stories are welcome and can be emailed to mary@lupusil.org.

LSI invites stories from people with lupus and caregivers.

If you have any questions about sharing your story, please contact Mary Dollear at mary@lupusil.org or 312-648-6053.

If you have any lupus-related questions please contact the LSI's Navigator for assistance or call 312-542-0002.
Educational Events   
 
Presented by: Zineb Aouhab, MD and 2nd year Rheumatology Fellow at Northwestern University 
Naperville Library - 95th St.
3015 Cedar Glade, Naperville IL 60564
Saturday, July 30, 2016 - tentative date
9:30am - Registration
10:00am - Program begins
Lupus and Lung Health Educational Teleconference
Thursday September 22, 2016 
6:30pm-7:30pm 
Presented by Dr. Mark Yoder, Rush University Medical Center 
Registered participants will receive toll free information to access the teleconference. 

Thanks to the generosity of donors and the success of the Illinois Lupus Walks, LSI is able to provide these programs at NO COST to participants.
 
Educational Event Wrap Up  

Living with Lupus Educational Event - Rockford
Rockford Educational Event

presented by Jilaine Bolek Berquist, MD was held at Mercy Rockford Health System, Janesville, Wisconsin, Univeristy of Illinois Rockford on May 31, 2016.  Thanks to the Rockford Support Group for making this event happen!

Vivir bien con lupus 
Spanish Language Educational Event
La Sociedad de lupus de Illinois te invita a nuestropresentaci√≥n anual  "Vivir bien con lupus."
Presentado por: Karen Mancera-Cuevas, MS, MPH, CHES
Fecha: junio 1,  2016
Casa Michoac√°n
1638 S. Blue Island Ave.
Chicago, IL 60608

Past Educational Teleconferences - Recordings
Nutrition and Lupus
Lupus Resources
Lupus & Disability
More!

Thanks to the generosity of donors and the success of the Illinois Lupus Walks, LSI is able to provide these programs at NO COST to participants.  
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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