Patient Resources and Support
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
Meetings: 2nd Saturday every other month from 10am-12pm
Chicago - Western Suburbs
Leader: Robin S.
Meetings: 3rd Saturday of every month
Chicago - Downtown
Leader: Mary Piper-Stanwyck
Phone: (708) 682-4193
Meetings: Second Wednesday of the month from 6-8 pm CST
Central Illinois (Decatur/Springfield)
Leader: Aissa Norris
Phone: (217) 853-6058
Meetings: Schedule varies. Please contact support group leader.
Wisconsin - Madison
Leader: Jennifer Meier
Meetings: Meets monthly, Thursdays and Saturdays. Contact support group leader for schedule.
Leader: Rosalind Parker
Meetings: 4th Saturday of every month
Omaha - Nebraska
Leaders: Jackie Hughes and Pat Fila
Meetings: Meets the 3rd Wednesday of every other month at 6:30 pm CST
Dallas-Fort Worth - Texas
Leaders: Lily Witherspoon and Serita Gibson
Meetings: Meets every other month.
Dayton/Cincinnati - Ohio
Leader: Demi Montgomery
Meetings: Meet in person every other month
Leader: Jennifer Bryson
Meetings: Meets the third Monday of the month every month.
Parents of Children and Teens with Scleroderma
Leader: Pamela Pour
Meetings: Meets the first Thursday and third Saturday of each month.
Scleroderma and the Lungs
Leader: Jim Stempel
Meetings: Meets the second Tuesday of every month at 6:30 CST
Fill out the Google form to be added to the meeting list!
Get Moving With Scleroderma
Topic: Exercise and wellness
Medical Advisor: Dr. Lesley Saketkoo
Meetings: Meets every 3rd Tuesday of the month at 5 pm CST
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.
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?
Friends & family
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
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
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
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.
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
"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."
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
More videos on our YouTube channel
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.
We are here to help. Contact us with any questions you may have.
(312) 660-1131 firstname.lastname@example.org