Lupus Society of Illinois 

eChronicle  June 2015
In This Issue
Quick Links
Upcoming Events

August 8
Western Suburbs Illinois Lupus Walk

August 12
Educational Teleconference:Lupus & Disability

September 27
Chicago Illinois Lupus Walk
Lupus Walk Ambassadors share their Stories

Mike Rangel lost both legs to lupus but it doesn't stop him from walking at the Illinois Lupus Walk.  This year, Mike will also serve as the Southern Suburbs Illinois Lupus Walk Ambassador.  "Mike is an inspiration to anyone living with adversity - and to the lupus community, he is a champion," says Charles Brummell, President and CEO of the Lupus Society of Illinois, the organization hosting the walk.

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Lupus Walk Ambassadors share their Stories

Mazzy Teich was diagnosed with lupus on May 2, 2014.  About two weeks later, she and her family participated in the 2014 Illinois Lupus Walk.  This year, Mazzy was selected as the Northern Suburbs Illinois Lupus Walk's Ambassador.

"Mazzy is young and committed to raising awareness about lupus in her community," says Charles Brummell, President and CEO of the Lupus Society of Illinois, the organization hosting the walk. 

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2015 Illinois Lupus Walks!

Thanks to the 800+ participants who came out to the Southern & Northern Suburbs Illinois Lupus Walks last month!

The walk has brought in over $80,000 so far!  What an amazing accomplishment!

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

Join us at one of our remaining  events - register today!
Western Suburbs -
August 8, 2015
Chicago (Lincoln Park) - September 27, 2015

Find out MORE!
Bank of America
Chicago Marathon
LCR

Running the
Bank of America
Chicago Marathon?

Want to run for a reason?

Join Lupus Charity Runners!

Contact Brianna Svec.
Join a Committee Committees are great opportunities to meet others in the lupus community. 

Contact LSI to find out more about ongoing committees and how you can help.
CFC #: 21759

A Message from the President & CEO

 

Thank you.  To everyone who worked so hard to make this year's Lupus Awareness Month one to remember!  We set out to make a difference and it looks like - together - we did.

 

The Southern and Northern Suburbs Lupus Walks were big successes - bringing out over 800 supporters and raising over $80,000 so far for LSI's programs and services.  What an amazing accomplishment! 

 


Our programs and services - like our Lupus Navigator Program - rely on the funds raised from the Illinois Lupus Walks to continue, however, each event is so much more than fundraisers.  Walks are a place to celebrate the lives of those who live with lupus every day -those still fighting and those who have lost their battle.  

Like the young man who brought his piggy bank into the Northern Suburbs Walk a couple of weeks ago and donated the entire $7.62 to his family's team.  

And the Walk Ambassadors who bravely share their stories with the public.  This year's Ambassadors' stories - Mike Rangel in the Southern Suburbs and Mazzy Teich in the Northern Suburbs - are available in this eChronicle.  I hope you take a moment to read their stories.

Walks are celebrations - and if you haven't attended one yet we hope to see you at the Western Suburbs or Chicago Lupus Walks coming up in August and September.

LSI's successful "I fight for lupus because..." selfie campaign generated an outpouring of support - even from our Medical Advisory Board - who are as committed as ever to making a difference in the lives of their patients.

Lupus Charity Riders took to Bike the Drive and raised over $40,000 - an AMAZING accomplishment.

LSI's Facebook page grew substantially - getting 199 likes - blowing past our goal of 1,000 to hit 1,049 likes by May 31!  Facts of the Day, Rush doctors answering lupus questions and Dr. Robert Katz's teleconference on Lupus & Bone Health helped make the LSI's page popular and the shares helped us to reach over 14,000 people with valuable lupus information.

We also helped you and the rest of the lupus community raise awareness by providing educational and awareness materials for schools, workplaces and churches.  The Department of Children and Family Services made lupus their cause for the entire month, hanging posters on all 10 floors of their building and hosting a lunch and learn for their staff.

Anita Lyons, a middle school teacher, who used our materials to raise awareness about lupus with staff and students.  And the organizers of the 2nd Annual Charity Golf Outing in Memory of Stephanie Wetzel that was hosted on Saturday, May 30, 2015 in Urbana, IL; and Allison, a 4th grader from Woodstock, Illinois who chose lupus as the topic of a school project - raising $26 for the LSI.

So again, I say thank you!  To everyone who helped make Lupus Awareness Month such a wonderful success!  

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.
LSI's Healthcare Professional Outreach
"Teaching F ellows in Lupus" Educates Healthcare Providers in Four Major U.S. Cities -LSI represents at all Chicagoland presentations 

LSI continues to work with the Lupus Research Institute on Chicagoland presentations.  On Wednesday May 27th, LSI went to Holy Cross for a presentation to doctors. 
  
Read more about the Teaching Fellows in Lupus project.
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 several questions on everything from support groups, medications and physician referrals. 

(LSI) Hydroxychloroquine or Plaquenil is very commonly used for lupus. It's considered to be an immune-modifying medicine. Generally two tablets are given together. An eye exam should be done once a year, although eye complications from long-term Plaquenil usage are infrequent; there rarely can be a dark pigment that forms around the macular area of the retina.

 

Recently, the cost for Plaquenil and the generic Hydroxychloroquine has increased substantially due to a shortage.

 

LSI was contacted about the problem and after some research have the following information to share:

If you do not have insurance, you can visit prescription assistance organizations like GoodRx.com. Input the drug information you're looking for and you can print out a coupon for reduced cost. The reduction may be significant. GoodRX.com 

 

Talk to your doctor about switching from Plaquenil to the parent compound for Plaquenil, which is Aralen, or chloroquine. There are pros and cons to switching to the Aralen, which is widely used in Canada. Each PT who is suffering this price crunch should find out if it is cheaper and if so ask their doctors if appropriate.

 

You are also encouraged to apply for the Living with Lupus Grant - LSI's financial assistance program that provides up to $400 for lupus-related medical expenses. Download an application here.


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
 
Every month, LSI provides 2 grants up to $400 each to cover lupus-related medical expenses.  Below is a letter received from a recent recipient:

 

Dear Lupus Society: 

 

I can't thank you enough for the help you have given me. I have such severe baldness from lupus my new wig is awesome.  It really makes a difference.  Also thank you for helping me with the overdue bills.  One less thing for me to stress over.  You guys are wonderful!

 

Thanks again,

Educational Opportunities 
 
Lupus & Bone Health
Dr. Robert Katz presented on Lupus And Bone Health via teleconference on 5/21.  You can listen to the entire presentation here.

Spanish Language Educational Event
Karen Alicia Mancera-Cuevas, the lead research Coordinator for Dr. Rosalind Ramsey Goldman at Northwestern presented our Spanish Language Educational Event on June 3, 2015 at Casa Michoacán.  Thanks to everyone who attended!

Save the Date

Lupus & Disability 
On August 12, Jeffrey Rabin of Jeffrey Rabin and Associates will present on Lupus & Disability via teleconference for LSI.

Registration is required. 
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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