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June 2021  

A Letter from the President

I hope this email finds you well and safe and enjoying the beginning of summer!

Lupus Awareness Month is over and the hard work we shared pays off!  Volunteers hosted group walks, posted to social media, shared facts of the day and we even got Governor Pritzker to proclaim May is Lupus Awareness Month!

For more on Lupus Awareness Month, visit our page here.

The Virtual run WALK ride has taken off.  We are at 20% of our goal.  We still plan to host a walk on August 14th in Naperville - we're not yet sure on how "open" that event will be.  We hope to have an announcement later this month!

We have a LOT of fun planned for the summer.  The Walk includes contests and prizes - some serious prizes, too! Win a TV, Airpods and MORE! Read all about it below. 

The Walks and donations make our mission possible.  Including the upcoming Living with Lupus Webinar on June 24, 2021.  The event is free with registration. We hope you'll be able to join us.

Other articles not to miss this month: Dr. Katz provided us with an article review, DELAYED DIAGNOSIS ADVERSELY AFFECTS OUTCOME IN SYSTEMIC LUPUS ERYTHEMATOSUS: ARTICLE REVIEW, you can read that here.

There's a lot to get through in this month's eNewsletter.  We hope you'll enjoy it and that we'll see you soon!  

Together we make a difference!

Mary 

 
 

Want Help Registering for the Walk?

Watch this instructional video!

Want Help Customizing your Walk Page?

Watch this instructional video!

EDUCATIONAL EVENTS

Living with Lupus

 

Living with Lupus
June 24, 2021 - 6:00pm - Web Meeting

This presentation includes tools to manage your lupus in your everyday life.  Practical tips will be discussed that may help you live with lupus - no matter how long you've lived with lupus.

Registration required for web meeting access.

 

Watch Past Educational Events!

LUPUS AWARENESS MONTH

Thanks to EVERYONE who made Lupus Awareness Month GREAT!

See how the lupus community used Lupus Awareness Month to spead the word!

LIVE & VIRTUAL run WALK ride!

Virtual run WALK & ride and LIVE Lupus Walk

Since 2001, the Lupus Society of Illinois has hosted walks to promote lupus awareness and support our mission in Illinois.  Today we invite you to join us again! 
COVID-19 has made getting together challenging and we think we've come up with a great solution! 
The 2021 Lupus Walks will include a Virtual Lupus Walk for the entire month of May AND a LIVE Lupus Walk (if possible) on August 14, 2021 at the Naperville Riverwalk. 
The LIVE Lupus Walk will be LIVE STREAMED on August 14, 2021, NO MATTER WHAT! 
Register on this page and you are eligible to win incentive prizes and enter contests with awesome prizes!  You will be able to participate in the Virtual Lupus Walk and the Illinois Lupus Walk on August 14, 2021! 

LUPUS WALK CONTESTS!

Did you know about the Virtual run WALK ride for Lupus contests?  We HAVE a LOT of prizes!  find out how to win a:

  • 32" Smart TV!
  • Apple Air Pods!
  • Cuisinart 18- piece grill set!
  • Athleta gift cards ($50 & $100)!
  • Jabra Titanium/Black!
  • Autoimmune Bath salts gift bag!

Download the WEB CONTESTS flyer here!    

Download the SOCIAL MEDIA # CONTESTS flyer here!

32" Smart TV

Airpods

Bath Salts

 
 

LUPUS WALK AMBASSADORS

Why do we walk?  Click the image to read these inspiring stories!

LaShon Gurrola, RN

Donna Emery

Bill Evans & Patti Engstrom

Stacey Kennedy-Conner

Dr. Ailda Nika

Gina Casto

Mari Gonzalez

Robet Knapel

Kay Mimms

 

LUPUS CHARITY RUNNERS

Bank of America Chicago Marathon

LSI has your guaranteed spot!

The Bank of America Chicago Marathon is back in 2021!  Get your guaranteed spot for this amazing event now!

LSI offers runners support every step of the way.  

Find out more here or call Mary at 312-648-6053.

LUPUS RESEARCH UPDATE

 

Dr. Robert Katz, Chair LSI BOD

DELAYED DIAGNOSIS ADVERSELY AFFECTS OUTCOME IN SYSTEMIC LUPUS ERYTHEMATOSUS: ARTICLE REVIEW

An article in the journal Lupus discusses delayed diagnosis. The conclusion of the authors is that a longer time to diagnosis was associated with worse outcomes. The average duration between the onset of symptoms and the diagnosis of lupus was almost four years. The longer the time to diagnosis, the higher the disease activity, the disease-related damage, and fatigue, and lower health-related quality of life. This was based on a self-report from patients, with the patient filling out the onset of first symptoms, the first physician visit, and the time of diagnosis reported by this self-administered questionnaire among lupus patients in Germany 2012.

SUPPORT GROUP UPDATE

New Support Group Starting This Month

Mari’s new Lupus Spoons 2.0 has its first meeting this month, and this group will always be virtual. 

Lupus Spoons Support Group leader, Mari has always had her support group meeting on Saturday's but recently seen the need to have a weeknight meeting as well. Starting May 19th @6pm, Lupus Spoons 2.0 will officially start. If you are interested in attending this virtual weeknight support group meeting, please contact lisa@lupusil.org or 312-542-0006 #LSIlupusawareness #LSIsupportgroup #💜 Lupus Spoons

 

COVID-19 RESOURCES & UPDATES

The LSI has led the lupus community through the COVID-19 crisis by providing expert educational information and providing factual information, including hosting 3 COVID-19 & the Lupus Community Web meetings with leading lupus doctors. You can watch the educational event below and the COVID-19 webpage here.

 

Dr. Robert Katz

Should People with Lupus Get the COVID-19 Vaccine
By Dr. Robert Katz

On December 11, 2020, the U.S. Food and Drug Administration issued the first emergency use authorization (EUA) for a vaccine for the prevention of coronavirus disease 2019 (COVID-19) 

 

Click the image to access the Web Meeting with Dr. Ramsey-Goldman

Click the image to access the Web Meeting with Dr. Jolly

Click the image to access the Web Meeting with Dr. Katz

RESEARCH OPPORTUNITIES

Team Gayla's Gang

Fatigue & Lupus

A major problem for people living with lupus is fatigue – chronic debilitating fatigue that significantly decreases quality of life and increases the risk of work disability.

How does someone manage fatigue?  Finding strategies that work for you and for lupus patients in general is the purpose of the Lupus Intervention Fatigue Trial (LIFT).  

 

312-542-0002 | info@lupusil.org 
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