A Letter from the President
I hope this email finds you well and safe and enjoying the last days of summer.
I speak for everyone at LSI when I say we value our constituents and the stories you share.
This week, we're running a story from Stacey Kennedy, a longtime supporter and volunteer. Stacey's story is about Clinical Trials and we hope you'll enjoy her perspective. Thank you Stacey for sharing.
We are so lucky to have an active and vibrant Medical Advisory Board. This week, two of our Medical Advisory Board Member's (MAB) articles are included. Dr. Robert Katz, is the MAB Chair as well as the LSI's Board Chair. He provided an article, "New Therapies for Difficult to Treat Lupus," and Dr. Ramsey-Goldman provided an article on "Lupus & Fatigue."
Part of what makes our MAB exceptional is the research they conduct. You can find out more about lupus research below in this email.
We are looking forward to the FIRST Chicago Lupus Walk since 2019. We are gathering in Lincoln Park at the Rowing Lagoon. All of your favorite activities are back - DJ Rick, the Team T-shirt contest, Kid's Tent and MORE!
Register for the last Lupus Walk of 2022 today!
And we have 2 more webinars scheduled - Lupus, Anxiety & Depression presented by Dr. Ben Small on October 13th and Lupus & Fibromyalgia presented by Dr. Alexandra Katz Small on November 10th.
Our educational events are only possible thanks to YOU! Your donations make achieving our mission possible!
We look forward to seeing you soon.
Together we make a difference.
Chicago Lupus Walk
Sunday, September 18, 2022
Rowing Lagoon, Lincoln Park
- DJ Rick (photo above)
- Team T-Shirt Contest
- Raffle Prizes
- Face Painting
- Kids Dash
- Incentive Prizes
- YOU & the LUPUS COMMUNITY!
Why I Participate in Clinical Trials
By Stacey Kennedy-Conner
Currently I have had lupus now for 20 years, 20 years of going through different clinical trials. I’ve had lows, like heart, kidney, lung issues, my husband and I have had a miscarriage, weight gain due to prednisone, pain, fatigue, and the list goes on. With that, I have also had highs, many highs that I am extremely thankful to have experienced like earning my Masters Degree in Counseling, working in the educational system for over 10 years, getting married and still being able to enjoy time with family and friends.
READ FULL STORY
New Thereapies for Difficult to Treat Lupus
One of the goals of management is to treat active lupus symptoms and inflammation but keep steroid dose down.
For mild to moderate lupus, methotrexate and azathioprine are options, and for more significant disease, mycophenolate and the newer therapies are avaiable including belimumab (Benlysta), anifrolumab (Saphnelo), and voclosporin (Lupkynis). In quite severe lupus, cyclophosphamide and rituximab should be considered along with prednisone.
Lupus & Fatigue
Chronic fatigue is a common problem and a burden for persons with inflammatory rheumatic diseases. Fatigue can persist even if there are no longer signs of inflammation while taking standard of care medications. A recent study conducted in Europe examined non-medication interventions to lessen fatigue using telephone-based counseling to change physical activity in the setting of psychosocial support.
Lupus, Anxiety & Depression
Thursday, October 13, 2022 | 6:30pm
Presented by Dr. Ben Small
Most people with lupus report symptoms of depression and anxiety. Some studies report rates of depression and anxiety twice as high in people with lupus as compared to the general population.
Join us for this important presentation.
Lupus & Fibromyalgia
Thursday, November 10, 2022
Presented by Dr. Alexandra Katz Small
Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have lupus also have fibromyalgia. It is important for people who have lupus to learn about fibromyalgia because symptoms of both conditions can be similar, but the treatments are different.
WEDNESDAY WARRIOR OF THE WEEK
LSI Introduced the "Wednesday Warrior of the Week" early this month. Don't miss the Lupus Warriors highlighted weekly posted on social media and here, in the eNewsletter every month.
2022 Chicago Illinois Lupus Walk & Fun Run
September 18, 2022
Rowing Lagoon – Lincoln Park
8:30am – Registration Begins
10:00am – Walk Steps Off
Lupus Walk season has officially begun! And we want you to join us - safely.
Here at Lupus Society of Illinois, our number one priority is to keep our employees, volunteers, and community safe. For the last two years, we have hosted webinars and virtual activities. We are excited to host LIVE Lupus Walk events!
And now we'd like to invite you, your families, and network of friends and colleagues to join in some fun and creativity by building your own personal fundraising pages for the Illinois Lupus Walks.
Funds raised at the Lupus Walks go directly toward LSI's mission - like our upcoming Educational Events!
Are you running the
Bank of America Chicago Marathon?
Lupus Charity Runners!
Since 2007, LSI has had a team in the Bank of America Chicago Marathon. We are so proud of our runners and honored by the runners who have joined our team over and over again!
If you have a spot in the race, join Lupus Charity Runners and get ALL of the benefits with NO fundraising minimum!
When you run for Lupus Charity Runners, we are with you every step of the way! Team members get:
- Training to help you complete the Bank of America Chicago Marathon safely!
- 2 tickets to the pre-marathon pasta party!
- LSI Water Bottle + goodies!
- Lupus Charity Runner singlet!
- Additional fundraising incentives for exceeding your goal!
- Receive personalized fundraising webpage to help you reach your fundraising goal!
- LCR fundraising guide, creative tips and one-on-one assistance to help you reach your goal!
- Exhilaration of doing good for others while doing well for yourself!
New Support Group Meeting Dates Listed
Ever thought of joining a Lupus Support Group? Start planning now! Groups are virtual and some meet in person. Our Support Group Leaders are Lupus Warriors.
Please contact Lisa at firstname.lastname@example.org or 312-542-0006 to find the group that best fits your schedule. Click here for a link to LSI's volunteer run Support Groups!
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.
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).
Lupus Clinical Trial Opportunity
If you have lupus, you may qualify.
• Do you have active lupus that is not responding to your current medications?
• Are you between the ages of 18-65?
If so, you may be eligible to participate in a clinical trial testing if a new type of cellular therapy is effective and safe in treating active lupus.