Scleroderma Patient
Education Conference
Saturday, May 3, 2025
Oakbrook, IL
8:00am - 3:45pm
About the Conference
If you or someone you love has been diagnosed with scleroderma you may have a lot of questions about what to expect and what your treatment options are. This is an opportunity for you to hear directly from scleroderma experts, get answers to your questions and learn about resources available to you.
You'll also have the opportunity to connect with others who have shared experiences and gain support from a community that understands what it's like to live with scleroderma. There's an exchange of ideas and information that can help you become your own best advocate and take charge of your health.
Registration is free and meals are included. Please register by April 25.
See what our Patient Education Conferences are all about!
Thank you to our sponsors
Hear the Latest Treatment Options
Listen to top experts in the field as they discuss how scleroderma impacts the body and what treatment options are available. Empower yourself with the knowledge to make more informed decisions about your health.
The Power of Community
Know that you are not alone in this journey. Connect with peers and get support from those who have valuable experience to share. Gain access to resources like support groups and community events that can help offer support year-round.
Get Answers to Your Questions
Scleroderma affects everyone differently so you may have a lot of questions about what to expect. Each session will feature interactive Q&A sessions, allowing you to engage directly with our experts. Plus you'll learn about other resources that can help you along your journey.
Practical Lifestyle Tips
Learn small everyday lifestyle changes that can boost your wellness goals and help alleviate symptoms. With topics ranging from diet and nutrition, to exercise and sleep, learn how to take charge of your physical and emotional health as it relates to scleroderma.
Topics & Speakers
Reflux and Esophageal Dysfunction in Scleroderma: Addressing Challenges and Enhancing Patient Outcomes
Yalini Vigneswaran, MD
Associate Professor, University of Chicago
Dr Yalini Vigneswaran, MD MPH FACS, is a minimally invasive GI surgeon with clinical expertise in foregut and bariatric surgery. She is an associate professor in the Department of Surgery at the University of Chicago where she leads as the Director of Esophageal Diseases and Program Director for the Advanced GI Surgery Fellowship. Dr Vigneswaran is recognized nationally and internationally for her innovative work in robotic surgery and the surgical treatment of the esophagus. She has particular interest in the treatment and management of GERD and hiatal hernia disease and has expertise in revisional esophageal and foregut surgery. Her presentation will focus on Gastroesophageal reflux disease (GERD) and esophageal dysmotility in scleroderma.
Scleroderma-Associated Interstitial Lung Disease: Clinical Manifestations and Treatment.
Cathryn Lee, MD
Assistant Professor, University of Chicago
Interstitial lung disease (ILD) is a complication of scleroderma that leads to inflammation and scarring of the lungs. This talk will discuss the clinical presentation, common tests ordered and their results, and treatment for scleroderma-associated interstitial lung disease.
Cathryn Lee is an Assistant Professor of Pulmonary and Critical Care Medicine at the University of Chicago. Dr. Lee has clinical and research interests in interstitial lung disease. Her research focuses on the relationship between inhalational exposures, both occupational and domestic, and clinical outcomes in patients with interstitial lung disease (ILD). Her current work describes the relationship between exposures and survival across all ILDs regardless of underlying subtype. Her overall goal is to better identify these exposures to both improve outcomes in patients with ILD as well as prevent ILD in those who are at high risk.
Evolving Treatment for Scleroderma: A look at current clinical trials
Michael Macklin, MD
Assistant Professor, University of Chicago
Director, Systemic Sclerosis program at the University of Chicago
Michael Macklin, MD is the director of the systemic sclerosis program at the University of Chicago and is an assistant professor of medicine at the University of Chicago in the department of rheumatology. Dr. Macklin has an interest in scleroderma and rheumatic causes of interstitial lung disease.
This talk will go over the basics of navigating how to search for recruiting trials, and discuss three actively recruiting trials at the University of Chicago including CAR T therapy and 2 other drug trials focused on interstitial lung disease and skin involvement in diffuse subtype patients.
Breakout Sessions
The afternoon includes interactive breakout sessions where you can participate in engaging discussions and demonstrations. Choose the topics that matter to you most. You'll have the opportunity to ask questions of our experts and hear from other patients on their experiences.
Yoga for Scleroderma
Cheryl Albright, OTR/L, C-IAYT
Yoga is for EVERY body! Make sure to join this interactive session to learn how you can use a yoga routine to nurture your body, ease scleroderma symptoms, and promote better overall health.
Understanding Scleroderma Renal Crisis:
What Patients Need to Know
Marco Bonilla, MD
In this talk, Marco Bonilla, MD will explain what scleroderma renal crisis is, why it happens, who is most at risk, and how it can be recognized early. He’ll discuss the warning signs to watch for, the importance of blood pressure monitoring, and how early treatment—especially with certain medications—can improve outcomes. This talk is sure to empower patients and caregivers with clear, practical information to help manage scleroderma and protect kidney health.
Ask the Dentist:
A Conversation About Scleroderma from the Neck Up
Martin Hogan, DDS and Margaret Miller, DDS
Dr. Hogan and Dr. Miller will review the most common findings associated with scleroderma and oral health. They will discuss some of the methods your dental team can utilize to help manage your condition, and also some ways that you can help yourself. We will discuss some unique methods for maintaining your oral health care and will include plenty of time for questions.
Scleroderma & the Hands
Michael Macklin, MD
In this breakout session, learn an overview about how systemic sclerosis affects our hands. This will include symptoms and manifestations such as Raynaud's, nailfold changes, alongside practical tips on caring for your skin.
Cooking for Scleroderma
Chef Katie Simmons
Learn basic recipes and helpful tips to help you stay nourished. Chef Katie will show you how to take advantage of shortcuts from the store. Plus, learn the basics of meal prep to create energy-packed snacks. Learn how to incorporate Mediterranean foods on your plate and avoid inflammatory foods. We'll also discuss how to personalize these recommendations based on your dietary needs. This will be a fun, interactive, and informative cooking demo and discussion!
Understanding Lung Transplant Indications:
Panel Discussion
Kevin Tsui, MD and Rade Tomic, MD
The talk will review indications for lung transplant, lung transplant outcomes and statistics, overview of transplant care including evaluation, surgery and post-surgical care, and outpatient follow-up. Additional specifics relevant to the scleroderma patient will also be discuss such as scleroderma renal crisis and esophageal disorders and their relevance to lung transplantation. This talk will be a must-attend for anyone looking for information or advice about the transplant process and for those with lung complications from scleroderma who may be wondering if they will be a candidate for transplant in the future.
Testimonials
Jaclyn R.
“The conference has made a meaningful difference in my life because I am able to get educated by doctors, hear from fellow scleroderma warriors and get answers. The Scleroderma Foundation of Greater Chicago has made a positive impact in my life.”
Mark G.
“When I first learned about having the disease, just coming to education conferences was really beneficial to see the doctors in person and understand the research that is going on.”
Charisse B.
“Attending conferences like the one in Chicago is where I learn new things regarding scleroderma and what’s happening to me. So at least I understand now how to combat it. Attending these conferences has changed my journey because it has educated me more and given me resources to help myself.”
What Conference Attendees Have to Say
"Very helpful! I would recommend to anyone with scleroderma."
"Be prepared to learn and know you are among others who can help and you become friends with."
"So many medical disciplines related to scleroderma are covered with lots of information and time to ask questions. Meeting other people with scleroderma is so valuable - there are others with the same challenges as you and it feels like a community with lots of support for one another."
"Please go - live is so much more impactful than just reviewing the recordings."
"It was very beneficial to see others going through this. It helps knowing you are not alone in dealing with a rare disease and that others have the same fears."
"Go for it! The conference gives you the opportunity to not only grow as a patient, but to decrease isolation and increase confidence, education, and social support."
Schedule
Schedule subject to change
8 - 9 am - Registration & Networking Breakfast
9:00 - 9:30 - Welcome & Opening Remarks
9:30 - 10:15 - Dr. Vigneswaran, Reflux and Esophageal Dysfunction in Scleroderma
10:15 - 11:00 - Dr. Lee, Scleroderma-Associated Interstitial Lung Disease: Clinical Manifestations and Treatment.
11:00 - 11:15 - Break
11:15 am -12:00 pm - Dr. Macklin, Overview of Current Clinical Trials
12:00 - 1:00 - Networking Lunch
1:00 - 1:45 - Breakout Session One (Choose One)
Ms. Albright, Yoga for Scleroderma or Dr. Tsui and Dr. Tomic, Understanding Lung Transplant Indications
1:55 - 2:40 - Breakout Session Two (Choose One)
Chef Simmons, Cooking for Scleroderma or Dr. Macklin, Scleroderma and the Hands
2:50 - 3:35 pm - Breakout Session Three (Choose One)
Dr. Bonilla, Understanding Scleroderma Renal Crisis or Dr. Miller and Dr. Hogan, Q&A with the Dentist
3:40 - 3:45 pm - Closing Remarks and Raffle
Map and Hotel Accommodations
Hyatt Lodge Oak Brook
Conference Center
2715 Jorie Blvd
Oakbrook, IL 60523
Hotel Accommodations
For those interested in hotel accommodations, there is a room block with a limited number of rooms at a special rate of $179, available for Friday, May 2 only. Register early to take advantage of this deal!
Deal expires, Friday April 4!
Covid-19 Policy
Covid-19 prevention guidelines will continue to be strongly encouraged to protect our scleroderma community. If you are experiencing any symptoms of Covid-19, such as a fever or cough, or have recently been exposed to someone who tested positive for Covid-19 we ask that you stay home. Surgical masks will be available but remain optional. For those who may be at higher risk or prefer being around others who are wearing masks, we will have tables reserved at the conference where masks will be required.