A Letter from the President
I hope this email finds you well and safe and enjoying Lupus Awareness Month!
We have exciting news! The LSI Board of Directors elected Dr. Robert Katz as Chair! Dr. Katz has been a part of the LSI's lupus community for decades and we're thrilled to have him in this leadership position!
Dr. Katz has presented at lupus educational events and is a leader in lupus research. We are looking forward to making the Illinois lupus community stronger by working together!
Find out more about Dr. Katz by reading the official press release here.
There's a LOT of news this month - Lupus Awareness Month continues and we are so grateful for so many of supporters for making the most of the opportunity. If you aren't getting our bi-weekly Lupus Awareness Month emails, you can sign up here.
The Virtual run WALK ride and Lupus Walk continues to engage the lupus community! You can do as much as you want whenever you want! One of our walkers (Beth Horan!) is walking 100 miles during the month of May! Thanks, Beth, for all you do! And thanks to EVERYONE who has used the Virtual run WALK ride and Lupus Awareness Month to increase awareness about lupus.
The month-long Virtual run WALK ride has allowed LSI to share more Walk Ambassador stories! We encourage you to read the stories below and see how LSI is making a difference in the lupus community!
Register for the FREE Caring for Someone with Lupus webinar coming up later this month. And if you missed the excellent Bringing Lupus Nephritis Out of the Shadows webinar in April, we have posted the recording here.
Other articles not to miss this month: Aurinia Announced Publication of Aurora 1 Phase 3 Study Results with LUPKYNIS™ (VOCLOSPORIN) in the Lancet, we have a new support group starting (the first virtual-evening-weeknight group!), Governor Pritzker signed our Lupus Awareness Month Proclamation and more!
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!
Caring for Someone with Lupus
May 27, 2021 - 6:00pm - Web Meeting
Having people to love and care about is never a burden. But watching them suffer with an illness like lupus can be. Get tips to help you be the lupus caregiver your loved one needs.
This event includes information on:
- Educating yourself about lupus
- Helping manage the lupus lifestyle
- Communicating with your loved one
- Understanding the lupus healthcare team
- Caring for yourself
Registration required for web meeting access.
Bringing Lupus Nephritis Out of the Shadows
Watch the presentation in full!
Educate! Participate! Celebrate!
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.
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!
Why do we walk? Read these inspiring stories!
Special thanks to Tawny & Dina for their help! Together we made a difference!
Governor Pritzker Proclaims May is Lupus Awareness Month!
On May 5th, Governor Pritzker signed our request to proclaim May as Lupus Awraeness Month!
Read the signed petition here!
Thanks to everyone who signed our petition asking Governor Pritzker to proclaim May is Lupus Awareness Month!
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.
Aurinia Announced Publication of Aurora 1 Phase 3 Study Results with LUPKYNIS™ (VOCLOSPORIN) in the Lancet
Study results demonstrate that LUPKYNIS in combination with typical standard of care (SoC) led to statistically superior complete renal response rates compared to treatment with SoC alone.
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 email@example.com 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.
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)
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).