Lupus Society of Illinois 

eChronicle August 2017
 We've Moved! 
Our new offices are: 
411 S. Wells St., Suite 710 | Chicago, IL 60607 
Our phone, email and website address will remain the same!  

  When you #StartWithaSmile, Amazon donates 0.5% of the purchase price to Lupus Society of Illinois. Bookmark this link!  
In This Issue
Quick Links
Upcoming Events

Music Fundraiser
Carey Ale House
Bring your blankets and chairs to the Cary Ale House for an outdoor concert.   
Donations raised will benefit the LSI.
Click here for a flyer. 
Volunteers Needed for Lupus Clinical Trial

Do you have active lupus symptoms that are not fully controlled by your medications? 
If you so, you may be eligible for the XSEL clinical trial being conducted at Northwestern Memorial Hospital. Qualified participants will receive the investigation medication or placebo at no cost.

Please call our staff at 312-503-1919 between 8a.m. and 4 p.m. for more information.   
Great Idea! BRITT 


Hosting a 50/50 raffle is a great way to raise funds for your walk team or lupus charity runner efforts!

Here's how it works:
Set a price for tickets and a date in the future to draw the raffle.  When you draw the winner, 50% of the funds raised go to your chairty efforts and 50% goes to the winner.

Questions?  Contact Leslie

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. 

NEW Support Groups  SGNEW 

A new support group is starting up in Humboldt Park.
The first meeting is Saturday, September 30, 2017 at the Humboldt Park Library, 1605 N Troy, Chicago, IL from 3pm-4pm.
A new support group is  looking to get started in the Evanston/Rogers Park area

If you're interested in more information, please email or complete this short survey 
CFC #: 21759
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.
A Message from the President & CEO

Volunteers are our real life super heroes.  That is the theme of this year's Volunteer Awards Luncheon and a truer phrase could not be spoken.  We are so lucky to have so many volunteers who go above and beyond to further our mission.  We thank this year's honorees for their outstanding contributions.  You can see a full list of honorees here.  We are celebrating these honorees on September 16, 2017 at a luncheon and you are invited to join us.

The Volunteer Awards Luncheon is, in my humble opinion, one of the most fun events LSI offers.  And a great opportunity to meet some of the most engaged lupus advocates in Illinois.  

Lupus advocates from around the country are supporting LSI as well.  The Bank of America Chicago Marathon is coming up and we have runners from outside of Illinois. One is Kendra Johnson from Massachusetts.   Kendra has lupus and is running in honor of a friend who lost her battle with lupus.  You can read Kendra's story here.

Lupus is a battle and we have a new fighter in support group leader LaKeisha Hill who is starting a new support group on September 30th in Humboldt Park.  LaKeisha joins a group of Lupus Support Groups leaders who are dedicated to improving the lives of the lupus community.  We are so grateful for their continued support.

The Chicago Lupus Walk is next month - just over 4 weeks away.  We are looking forward to another great event!  If you haven't joined yet, there's still plenty of time to register, start a team, and prepare for the Team T-Shirt Contest.

I hope you have time to look through this eNewsletter.  We have been busy and we have some great opportunities coming up - we hope to see you there.

Together we make a difference.
Charles Brummell 
Lupus Charity Runner Profile
Kendra Johnson    

Kendra Johnson lives with lupus and is running the Chicago Marathon in honor of a friend with lupus who lost her battle from complications from lupus.
Here's her story, in her words:
Twenty-two years ago, I woke up with a rash covering my entire body and could barely get out of bed. I tried to take a shower and couldn't raise my arms above my head to blow-dry my hair. I cringed with every step I took as I tried to walk down the three flights of stairs to my car from the third-floor apartment I lived in, crying each step of the way. I was twenty-two years old. Ironically, I had read the tiniest blurb about Lupus the day before in the newspaper and had thought to myself, "What if this is what I have?"


Chicago Illinois Lupus Walks
1 Walk left for 2017!  Register today!

Chicago Illinois Lupus Walk
Sunday, September 24, 2017
Lincoln Park, Chicago (near Stockton & LaSalle)

New Walk Incentive Prizesinc
Raise funds - win prizes!
Walk Participants raising $100+ will receive awesome prizes!

Individual Incentive Levels
Raise $100+ - receive an LSI TOTE BAG!
Raise $300+ - receive and LSI tote bag & CERAMIC TRAVEL CUP
Raise $600+  - receive an LSI tote bag, ceramic travel cup & POWER BANK!
Raise $1,000+ - receive an LSI tote bag, ceramic travel cup, power bank and a FLEECE VEST!
Download the Incentive Flyer here!
Volunteer Awards Luncheon
LSI Celebrates Outstanding 2015 & 2016 Volunteers!

Join us as we celebrate our outstanding volunteers at this year's Volunteer Awards Luncheon!

Volunteers: Our Real Life Superheroes!
Saturday, September 16, 2017
Maggiano's Little Italy
240 Oakbrook Center
Oak Brook, IL

Tickets On Sale NOW!
Adults: $30
Seniors: $25
Kids 12 and under: $20

Can't make it?  Donate in honor of an awardee here
Make a donation to the luncheon here
Lupus Educational Event
Western Suburbs Educational Event

Thanks to everyone who came out for the Western Suburbs Educational Event in Naperville on July 29, 2017. 

Special thanks to our presenters, Dr. Ailda Nika and Dr. Juan Schmukler both from Rush University Medical Center.

Download their presentations here:
Dr. Ailda Nika,  Topic: Heart & Lupus
Dr. Juan Schmukler, Topic: Immunizations in Patients with Lupus
Western Suburbs Walk Wrap Up  
The Western Suburbs Illinois Lupus Walk was on August 12th in Naperville, IL was a HUGE success!
Blue skies and the Cha Cha Slide at the 2017 Western Suburbs Lupus Walk 
Together,over 500 participants came out to show their support and we expect to exceed $50,000 raised!

THANK YOU to everyone who helped make this possible!

A Special THANK YOU to the walk day volunteers and the 2017 Western Suburbs Illinois Lupus Walk planning committee!

We are always looking for help with planning our Lupus Walks!  If you are interested in helping to shape next year's event, please contact Leslie.
Lupus Research
An invisible student population:
Accommodating and serving college students with lupus.

Published Abstract
This article attempts to shed light on the role that lupus plays in the lives of college students
 in their academics and other unique psychosocial needs.

(Thanks to Dr. Meenakshi Jolly for forwarding this on.) 

Full Text
Making a Difference CHAS
National Center for Advancing Translational Sciences (NCATS)

On June 30, 2017, LSI sent a representative to the first NCATS Day in Washington DC. 

The purpose of NCATS Day: Partnering with Patients for Smarter Science was to inform patients and their advocates about NCATS, including its philosophy and programmatic approaches; identify patient needs; and collectively discuss ways for improved patient inclusion in NCATS' 
translational science activities.
LSI was able to learn more about this new department of the National Institutes of Health and find out new avenues for research that may improve the lives of people with lupus.

For more information about NCATS click here
For an article about the day click here

Contact LSI with questions or for more information at or 312-542-0002.
Fun Fundraiser! 
Wisdom Chapter #25 presents Wisdom's Amazing Race!
What an innovative and fun way to raise awareness and funds for the Lupus Society of Illinois!

Create your own team and embark on an amazing race around Chicago!

Choose to participate to benefit the Lupus Society of Illinois and your team will compete for a cash prize and charitable donation made in honor to the LSI!

National Meeting on Lupus Drug Development
Lupus PFDD Meeting

The national lupus patient advocacy community is excited to announce that people with lupus will have the chance to be part of a history-making project that includes a meeting called Lupus: Patient Voices on September 25 in the Washington, DC area.  This very important effort is a tremendous opportunity for individuals with lupus to contribute to lupus drug development by sharing how the disease affects their daily lives and their thoughts on current and future treatments.

If you have lupus or are the parent of a child with lupus, we urge you to make your voice heard by sharing your lupus experience and what matters most to you when it comes to lupus drugs.

Click here for more
Click here for the survey
Click for the Lupus PFDD Meeting website
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