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April 2021  

A Letter from the President

I hope this email finds you well and safe.  

It looks like spring has sprung!  We are very excited that Lupus Awareness Month is just weeks away AND our Lupus Walk season can begin!  Due to COVID-19 restrictions, we are hosting the Virtual run WALK Ride throughout May.  Just like last year, we'll have contests and prizes throughout the month AND we are hoping to have a LIVE Lupus Walk in Naperville on August 14th!  (We'll live stream the Grand Finale from Naperville even if we can't gather!)

The best part is, everyone who is registered in May is also registered for the event on August 14th!  

Find out more and register here.

Funds raised through the Lupus Walks and the Virtual run WALK ride enable the LSI to provide educational events, like the upcoming Bringing Lupus Nephritis Out of the Shadows webinar coming up on April 27th.  We hope you'll be able to join us for this important and FREE event!

We are highlighting two of our amazing support group leaders this month!  LaShon leads two support groups, is a nurse and is studying to be a Family Nurse Practitioner - read her story here.  An Mari has been invited to speak at a Facebook Live event this Friday at 11:30am.  We are proud - and grateful - for all they do!

We are preparing for Lupus Awareness Month! Thanks to everyone who signed the Lupus Awareness Month Proclamation petition.  We sent the request to Governor Pritzker and will keep everyone informed of the the progress.

Congratulations are in order for Robert Knapel who is the new President of the LSI Associate Board!  Thank you Robert for your leadership!

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 

EDUCATIONAL EVENTS

Dr. Alvin Wells

Bringing Lupus Nephritis Out of the Shadows 
April 27, 2021 - 6:00pm - Web Meeting

Join the Lupus Society of Illinois and ALL IN™ for a virtual discussion featuring Dr. Alvin Wells about lupus and lupus nephritis. The presentation and Q&A are brought to you by Aurinia Pharma U.S., Inc 

Lupus Nephritis is a disease involving inflammation of the kidneys caused by systemic lupus erythematosus (SLE). In lupus nephritis, the kidneys cannot function properly to remove waste from the blood and control the amount of fluids in the body. 

About 50% of people with lupus will go on to develop lupus nephritis and about one third will have lupus nephritis at the time of diagnosis. 

This presentation explains what lupus nephritis is, the treatments available and the resources accessible to the entire lupus community. 

 

Dr. Zineb Aouhab

TO LIVE WITH LUPUS,
WE NEED TO KNOW ABOUT LUPUS

Watch the presentation in full!

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 WARRIORS AT WORK

LaShon Gurrola, RN

Meet LaShon Gurrola  
Mother, Nana, Registered Nurse and Lupus Warrior From Oak Park, IL 

Recently, LSI found out Support Group Leader LaShon Gurrola, who is already a Registered Nurse, is going back to school to become a Family Nurse Practitioner (FNP)!  Going back to school while working and supporting the lupus community is a huge undertaking.  We asked LaShon to share her inspirational story to inspire and support the lupus community.

 

Lupus Spoons Leader on Facebook Live 
Friday, April 9, 2021 | 11:30am CST

The Fibromyalgia Impact Tour makes a virtual stop in Chicago to meet with Mari, creator of Lupus Spoons! Lupus Spoons is here to help educate, empower, and support others living with Lupus and other autoimmune diseases.
Mari will walk us through what inspired her to start Lupus Spoons, we'll learn how she supports the community, and of course we'll have some fun exploring Chicago.

ADVOCACY ACTIVITY

May is Lupus Awareness Month Petition

Thanks to everyone who signed our petition asking Governor Pritzker to proclaim May is Lupus Awareness Month!  The request was submitted!

 

LRA’s Advocate for Lupus Research Week 
Thanks to everyone who participated in the Lupus Research Alliance's Advocate for Lupus Research Week!  The LRA worked hard to find a way to join forces with advocates throughout the country to advocate for lupus!

It's not too late to get involved!  The site will be available through April 16, 2021.  You can access it here.

The site includes recordings and information on how to advocate for lupus!  

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.

ASSOCIATE BOARD UPDATE

Congratulations Robert Knapel! 
New Associate Board President!

On March 30th, Robert was named President of the LSI Associate Board!  Robert will bring his leadership skills to this group of young leaders!  Congratulations, Robert!

 

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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