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Patient Resources and Support

Support Groups

We have a strong community of people who are here for you. Support groups provide a forum to share experiences and ask questions among a group of people who understand what you're going through. Although support groups are labeled by geographic region, they currently meet online and anyone is welcome to attend.

Chicago - North Shore

Leader: Franny Kaplan

Phone: 847-533-5075

Email: nsscleroderma@gmail.com

Meetings: 2nd Saturday every other month from 10am-12pm

Chicago - Downtown

Leader: Mary Piper-Stanwyck

Phone: (708) 682-4193

Email: piperstanwyck@gmail.com

Meetings: Second Wednesday of the month from 6-8 pm CST

Wisconsin - Madison

Leader: Jennifer Meier

Email: sclerodermagroupmsn@gmail.com

Meetings: Meets monthly, Thursdays and Saturdays. Contact support group leader for schedule.

Omaha - Nebraska

Leaders: Jackie Hughes and Pat Fila

Email: sclerodermaspartans@gmail.com

Meetings: Meets the 3rd Wednesday of every other month at 6:30 pm CST

Scleroderma and the Lungs 

Leader: Jim Stempel

Email: jas.stopscl@gmail.com

Meetings: Meets the second Tuesday of every month at 6:30 CST

Fill out the Google form to be added to the meeting list!

Highland Park support group photo

Chicago - Western Suburbs

Leader: Robin S.

Email: westburbsscleroderma@gmail.com

Meetings: 3rd Saturday of every month

Central Illinois (Decatur/Springfield)

Leader: Aissa Norris

Phone: (217) 853-6058

Email: 1912barn@gmail.com

Meetings: Schedule varies. Please contact support group leader.

NW Indiana

Leader: Rosalind Parker

Email: nwindianassg.rparker@gmail.com

Meetings: 4th Saturday of every month

Dallas-Fort Worth - Texas

Leaders: Lily Witherspoon and Serita Gibson

Email: sclerodermadfw@gmail.com

Meetings: Meets every other month.

Get Moving With Scleroderma

Topic: Exercise and wellness

Medical Advisor: Dr. Lesley Saketkoo

Meetings: Beginning in September, meets every 3rd Tuesday of the month   5 pm CST 

Education Programs

We connect you with experts in the field to help you understand scleroderma and how to live better. Sessions cover a range of topics from nutrition to lung involvement to GI issues. We continue to add new programs throughout the year. Check back for updates or sign up for email alerts.

Group at education conference

WHY SHOULD I ATTEND?

  • Meet and learn from leading scleroderma specialists

  • Ask questions and get the answers you need

  • Connect with others living with scleroderma

  • Find new ways to manage and improve your health

  • Develop a support network

  • Get motivated and inspired!

WHO SHOULD ATTEND?

  • Scleroderma patients

  • Caregivers

  • Friends & family

  • Physicians

Scleroderma Fall Patient Education Conference

Saturday, October 21, 2023

Gleacher Center - Chicago, IL

Experts from the Northwestern Scleroderma Program will discuss various topics such as managing GI symptoms, scleroderma and the lung, PAH, nutrition and more. This conference was developed for scleroderma patients and their caregivers to better understand your diagnosis, learn about treatment options and better manage the disease. This program is free. Lunch will be provided.

Yoga for Scleroderma Webinar

Saturday, November 18, 2023

 

This webinar will teach you how to adapt and stay safe in a yoga class, whether you are exercising on the floor, in a chair or standing. Our demonstrators will show props, tips and tricks to make yoga accessible, showing common poses that offer a full range of motion for the spine, core/quad strengtheners, and how to hack down-dog, the pose that keeps people out of yoga classes, all while being GERD-friendly.  

 

We will discuss how yoga can reduce overstimulation of the vagus nerve and the benefits in daily life, especially digestion.  We will end with a guided relaxation to reset the Rest & Digest cycle. There will also be time for questions throughout the presentation.

Workshop: Improving Mental Health With Chronic Illness

Wednesday, November 29, 2023

If you’ve experienced feelings of sadness, anxiety, isolation, fear, grief, or depression since receiving your scleroderma diagnosis, you are not alone. Continue the discussion from the Fall Patient Education conference with this informational and transformative mental health workshop presented by the team at Ellie Mental Health. This interactive workshop will provide practical tools and tips for improving our mental and emotional health. We will discuss various mental health challenges that we face with chronic illness, particularly scleroderma.

Healthy Strategies for Coping with Scleroderma (Webinar)

Saturday, June 3, 2023

10am CST

This is a workshop for newly diagnosed patients and their caregivers. The format will include both a presentation on coping as well as a group discussion in which participants can ask questions and share perspectives about coping with scleroderma, coming out of the pandemic, and anything else as it arises. This workshop is led by Dr. Judy Wilen from Northwestern Medicine.   

Scleroderma 101 (Webinar)

Tuesday, May 23, 2023

5-6 pm CST

If you've recently received a scleroderma diagnosis you may have a lot of questions about what to expect and what your options are. Join us for Scleroderma 101, a free virtual meeting led by Dr. Carrie Richardson from the Northwestern Scleroderma Program. The meeting is held via Zoom.

 

Anyone is welcome to attend. This is your chance to learn about scleroderma, get your questions answered, connect with others, and learn how to stay mentally and physically well.

Scleroderma Patient Education Conference (Video Recordings and Resources)

Saturday, May 13, 2023

Hyatt Lodge - Oakbrook, IL

8am-3pm

 

Join us for an informative and inspirational day! Our presenters will discuss ways to manage scleroderma and answer your questions. Topics will include gastrointestinal management, lung involvement in scleroderma, dental care, exercise and more. This program is free. Lunch will be provided.

Scleroderma Lung Disease (Webinar)

Tuesday, March 21, 2023

4-5pm CST

If you have interstitial lung disease (ILD) as a result of scleroderma (SSc) or would like to learn more about how scleroderma affects the lungs, join us for a case discussion with the experts at the Northwestern Scleroderma Program. They will discuss various scenarios involving SSc and ILD and what is involved in considering treatment options. 

Presenters:
Jane E. Dematte D'Amico, MD, Professor of Medicine, Northwestern University, Feinberg School of Medicine, Director of Interstitial Lung Disease Program

Dr. Anthony Esposito, Assistant Professor of Medicine Pulmonary Critical Care/ILD

Ray Goodwin, APRN, ILD Nurse Practitioner

Events Calendar

"This has been my first conference and I'm extremely glad that I came. The information has been very helpful and everyone I met was very kind. I plan to discuss some of the testing and treatments with my doctors. Thank you."
"We, as patients, need to continue being proactive to ensure the best possible healthcare. These conferences help to promote and even instigate this process."
"I enjoyed sharing information, stories, and experiences with other scleroderma patients. I also liked hearing from these medical experts to explain this disease - which makes me feel more in control of my life."

Educational Videos

New Drug Approvals for Scleroderma Interstitial Lung Disease

Yoga for Scleroderma Routine

Cooking Nutritious Meals at Home: Advice from a Chef

Raynaud Phenomenon and Digital Ulcers in Scleroderma

  • YouTube
More videos on our YouTube channel
youtube.com/gcscleroderma
Active senior couple practicing yoga

Yoga for Scleroderma

Empower yourself to relieve symptoms and reduce stress! Yoga for Scleroderma was founded by Kathy Randolph to offer relief to scleroderma patients through yoga postures, breathing techniques and guided meditation. Their goal is to make yoga accessible for everyone so you can keep moving. Visit yogaforscleroderma.com to learn more. 

Questions?

We are here to help. Contact us with any questions you may have. 

(312) 660-1131    info@stopscleroderma.org

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