Lupus Society of Illinois 

eChronicle April 2015
In This Issue
Quick Links
Upcoming Events

Educational Teleconference: Lupus & Bone Health

May 24
MB Financial's Bike the Drive

May 30
Stephanie Wetzel Charity Golf Outing

May 31
Northern Suburbs Illinois Lupus Walk

June 6
Spanish Language Educational Event

August 8
Western Suburbs Illinois Lupus Walk

September 27
Chicago Illinois Lupus Walk
Research Update

Ever wonder where your research dollars go?

LSI is a member of the Lupus Research Institutes National Coalition. 

Find out the Impact of Research Innovation
Bank of America
Chicago Marathon
LCR
Planning to run the
Bank of America
Chicago Marathon?

Join our team!  For the 9th year, Lupus Charity Runners will be participating in this spectacular event!

Find out more!
Volunteer Highlight 

We called on two volunteers to share their personal stories.  The stories are finally available and we'd like to share them with you!

Interested in sharing your story? Click here
Shamrock Shuffle

For the first year, LSI's Lupus Charity Runners were represented at the Bank of America Shamrock Shuffle 8K!

Thanks to everyone who participated and raised nearly $2,000!
Junior Board Bulls Game

The LSI's Junior Board had an outing at the Chicago Bulls Game on April 3!

For more information on the Junior Board click here.
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

 

LSI fights for lupus every day.  This edition of the eChronicle is full of information about how we fight - and plenty of opportunities for you to join the battle!

 


I hope you allow some time to review the activities covered in this edition.  Fighting for lupus on the national level is important to us and you'll find a review of our participation in the LRI National Coalition's Advocacy Day in Washington, DC.   We have been committed to taking the fight for lupus to healthcare professionals this year and we have been fortunate to work with the LRI on the Teaching Fellows in Lupus Project which provided us an opportunity to get in front of health care professionals with potentially life-saving lupus information.  

The LSI's Navigator program exists to support the lupus community with any lupus-related concern.  We have an interesting article from the Navigator Program about clinical trials.  We hope that you contact the LSI's Navigator Program with any lupus related question.  The Navigator Program is open to anyone in the lupus community with a lupus related concern.

There is no better tool to fight for lupus than during Lupus Awareness Month starting May 1st. LSI is launching our activities today.  We have 2 Illinois Lupus Walks next month in honor of Lupus Awareness Month.  We hope to see you at one (or both!) of them.  LSI will also have a team for Chicago's MB Financial Bike the Drive event on May 24th.  

We have equally important grass-roots activities geared to increasing awareness about lupus in your individual community.  For instance, you could re-post the LSI's Fact of the Day on your Facebook page or post a Lupus Awareness Month flyer in your cubicle.  

We've already been contacted by individuals planning events - a Ladies Shopping Event on May 3rd, a pizza party on May 14th, a fashion show on May 17th, or the 2nd annual Stephanie Wetzel Charity Golf Outing in Champaign on May 30th.

No matter how you fight for lupus awareness throughout the month, we hope you'll share that information with LSI.  In fact, this year, LSI is hoping you'll write it down and post it to social media by using the hashtag #LSILupusAwareness.  At the end of the month, one individual will be selected to receive a prize.

We are making progress towards our mission to promote lupus awareness and complement the work of health care professionals by providing personalized resources for the lupus community while supporting research.  We can't do it without you.

Together we make a difference,

Charles Brummell
Lupus Awareness Month 

Lupus Awareness Month is the time of year when the lupus community takes time to educate their families, workplaces and neighborhoods about lupus.  Education can be as modest as sending an email to your friends and family about lupus to organizing a Lupus Awareness Day at your office.  We encourage you to get creative as you raise awareness about this often misunderstood disease.

Please let us know what you're up to - you may inspire others in the lupus community to take action!

Click here to see some awareness building ideas and to see what others in the lupus community are up to.

Email 
mary@lupusil.org
 or call Mary at 312-648-6053. 
Advocacy Day in Washington DC
with the Lupus Research Institute 

On March 22nd and 23rd, Charles Brummell and Mary Dollear of the Lupus Society of Illinois joined the Lupus Research Institute and the LRI's National Coalition representatives in Washington, DC to lobby legislators on behalf of lupus concerns.

Read more, including the four issues lobbied for.
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 

Teaching Fellows in Lupus, a new partnership program of the Lupus Research Institute (LRI) and the American College of Rheumatology (ACR), aims to alleviate racial disparities and reduce the time to diagnose and treat lupus by giving providers the tools they need to recognize symptoms and refer patients on to proper treatment and specialist care. 
  
Read full story
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:

 

"I won the Lupus grant for 2014. I'm so very appreciative of this grant. I've had a really rough couple of years and at the end of this year 2014 things just got worst. At a time where I didn't know where ends would meet the Grant gave me an opportunity to take care of some very needed priorities. I would like to thank everyone involved for choosing me as the recipient. I apologize for the delay in a thank you letter. I've been in between places and still struggling to get things back to normal. I hope and pray that this grant continues to bless other Lupus patients in the years to come."

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 10 questions as varied as physician referrals and service dogs. 

One question LSI received frequently was about clinical trials.  A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge.

In a clinical trial, participants receive specific interventions according to the research plan or protocol created by the investigators. These interventions may be medical products, such as drugs or devices; procedures; or changes to participants' behavior, such as diet.

New drugs are only approved by the FDA for lupus after the drug has been proved effective in clinical trials.

If you have any questions about clinical trials or are interested in participating in clinical research, please contact the LSI's Navigator for assistance or call 312-542-0002 
Educational Opportunities 
 
Studies have found an increase in bone loss and fracture in individuals with lupus. In fact, women with lupus may be nearly five times more likely than those without the disease to experience a fracture from osteoporosis.

Join us for this important teleconference on Lupus & Bone Health presented by the LSI's Medical Advisory Board Chair's Dr. Robert Katz.

Thursday, May 21, 2015 at 6:30pm

REGISTRATION REQUIRED
Registered participants will receive toll free information to access the teleconference.

 

Save the Date
June 6, 2015 - Latino Educational Event (Spanish Langauge)
Volunteer!
Help make a difference this Lupus Awareness Month by helping at the LSI's office!  LSI needs volunteers interested in coming into the office and making telephone calls. 
  Contact Taurean Jackson today.
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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