Lupus Society of Illinois 

eChronicle July 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

Runner Profile shold
Emily Deering

As some of you may know, this year I will be running the Bank of America Chicago Marathon.    I will be running as a Lupus Charity runner in honor of my Grandma, Carol Deering.    My Grandma was diagnosed with Lupus in 2007 and has struggled with the disease for over 10 years now.    For those of you that are unfamiliar with Lupus, Lupus is a chronic inflammatory disease in which your immune system attacks your own body, specifically attacking your tissues and organs.    The inflammation that is caused by Lupus can affect your joints, skin, kidney, blood cells, brain, heart and lungs.    Unfortunately, there is no cure for Lupus yet, only ways to help manage the disease to keep it under control.
   
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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.
  
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. 

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NEW Support Groups 

Two new support groups are looking to get started. 
1. in the Logan Square/Bucktown/Humbult Park area  
2. in the Evanston/Rogers Park area

If you're interested in more information, please email taurean@lupusil.org 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

I hope you are enjoying summer - it is hard to believe that we are inching closer and closer to autumn! LSI has had a busy summer - preparing for the Lupus Walks coming up in Naperville and Chicago and educational events - like the event coming up this Saturday, July 29, 2017 in Naperville. We have several educational events this fall that we are very close to announcing - stay tuned for more on those.

Every walk has an ambassador - and this year's Western Suburbs Lupus Walk Ambassador is Corrin Stines. Corrin was our Lupus Walk ambassador in 2013 when she was just 15 years old. Now 18 years old, Corrin is again sharing her experiences to benefit the lupus community. You can read Corrin's story here.

A huge role of Lupus Walk Ambassadors is to increase awareness about lupus. LSI is open to all opportunities to achieve this goal. Last year, a student working on a school project about lupus contacted us for help and we were happy to do whatever we could. You can see the results in the vi deo below.

We also work with Health Care Professionals - like the recently published article by Dr. Jolly of Rush University Medical Center. You can read the article here.

And we are grateful whenever someone in the lupus community creates a new avenue for awareness - like Lupus Charity Runner Emily Deering who is running 26.2 miles in honor of her grandmother who has lived with lupus since 2007. Every time Emily sends out a request to support her marathon efforts is an opportunity to educate someone about lupus. You can read Emily's story here. Thanks to Emily and all 15 of our Lupus Charity Runners participating in the Bank of America Chicago Marathon.

Walks are another opportunity to raise awareness about lupus. Below you can read about Brittney Lindstrom of team Fighting Warriors at the Western Suburbs Lupus Walk who is using her birthday to help recruit team mates. Thank you Brittney for using your birthday to increase awareness!

Summer is in full swing and we continue to push for greater awareness, education and research. We are so grateful to have your continuing support.

Together we make a difference.
 
Charles Brummell 
Lupus Educational Event
Western Suburbs

The annual Western Suburbs Educational Event will be on Saturday, July 29, 2017.  registration begins 9:30am and the first program begins at 10:00am at the Naperville Library - 95th St.
3015 Cedar Glade, Naperville IL 60564.

This year will include 2 speakers from Rush University Medical Center's Lupus Clinic - Dr. Ailda Nika and Dr. Juan Schmukler.

Check back soon for information on topics.

Refreshments will be served.  RSVP is recommended.
Lupus Ambassador Grows UpCORRIN
Corrin Stines named Western Suburbs Lupus Ambassador for second time  

Corrin Stines was diagnosed with lupus at age 13 and served as th
e Western Suburbs Lupus Walk Ambassador at
age 14. As people, we all evolve over the course of our lives. Challenges are al
ways shaping us, but we adapt. We learn how to cope and find the support we need; and we learn how strong we really are. For 18-year-old Corrin Stines, the past four years as a lupus patient have taught her a great deal about all of these things.

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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
Illinois Lupus Walks
2 Walks left for 2017!  Register today!

There are 2 Lupus Walks left for 2017 - don't miss out on this opportunity to let your voice be heard!

Western Suburbs Illinois Lupus Walk
Saturday, August 12, 2017
Naperville Riverwalk, Naperville

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

Lupus In The News 
GSK receives FDA approval for a new self-injectable formulation of Benlysta (belimumab) for systemic lupus erythematosus

GSK announced today that the US Food and Drug Administration (FDA) has approved a new subcutaneous formulation of Benlysta (belimumab) for the treatment of adult patients with active, autoantibody-positive SLE who are receiving standard therapy. Systemic Lupus Erythematosus (SLE) is the most common form of lupus, a chronic, incurable autoimmune disease producing autoantibodies that can attack almost any system in the body. The approval marks the first subcutaneous self-injection treatment option for patients with SLE.

FULL STORY
Making a Difference JOLLY
Published Article in Lupus Journal

Part of LSI's mission is to support research.  We accomplish this through funding research programs, promoting clinical trials and research opportunities and - when possible - facilitating research.

That was the case when LSI partnered with Dr. Jolly at Rush University Medical Center on a survey study, resulting in the published article on June 28, 2017 in Lupus Journal: 

Practice patterns in longitudinal lupus care provision: Patient and Physician Perspectives (PDF)

LSI is only able to support opportunities like this thanks to donations and fundraising opportunities like the Illinois Lupus Walks.
Making a Difference CHAS
Student Video on Lupus

As part of our mission to increase lupus awareness, LSI is happy to work with students on projects for school.  Charles Brummell recently appeared in a student project below.

Contact LSI with questions or for more information at info@lupusil.org or 312-542-0002.
Great Idea!BRITT

Thanks to Brittney Lindstrom of team Fighting Warriors for the Western Suburbs Lupus Walk for using her birthday to help recruit team mates!  

Walks are a great way to increase lupus awareness - thanks for thinking outside of the box, Brittney, and making lupus awareness a priority!
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!

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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!
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