Scleroderma Patient
Education Conference
April 24 - 25, 2026
Oakbrook, IL
Get The Support You Deserve
Topics and Speakers
Scleroderma 101: An Overview
Friday, April 24 (2 - 4 pm)
Carrie Richardson, MD
Co-Director, Northwestern Scleroderma Program
If you or a loved one recently received a scleroderma diagnosis you may have a lot of questions about what to expect. Dr. Richardson will present an overview of scleroderma including the different types, how it affects different parts of the body and how it is treated. You'll have a chance to ask questions of one of the top experts in scleroderma. Following the presentation we'll discuss ways you can best advocate for yourself, how to find resources, how to work with your physicians and hear from others who will share their experience navigating scleroderma.
Dr. Richardson has worked with the Northwestern Scleroderma Program since 2012 and has published several papers on scleroderma, calcinosis, myositis, and interstitial lung disease. She completed her residency at Northwestern in 2015 and her fellowship at Johns Hopkins in 2018, and she returned to Northwestern in early 2022 as Co-Director of the Northwestern Scleroderma Program.
Finding Strength & Resilience in the Face of Adversity - Friday, April 24 (5:00 - 6:30 pm)
Amy Gietzen, Monika Hilton, Jim Stempel
Learn from your peers and find hope at this engaging and inspirational panel discussion. Don’t miss this opportunity to connect with people who truly get it and can provide the support you deserve!
Amy Gietzen is a nationally recognized scleroderma patient advocate, educator, and public speaker with more than two decades of lived experience. Diagnosed with systemic scleroderma at age 19, later complicated by interstitial lung disease and cardiac involvement. Amy has dedicated her life to amplifying patient voices and improving care for those living with rare diseases. Amy has represented patients across more than a dozen organizations, advisory boards, and committees, and regularly speaks to clinicians, researchers, and lawmakers nationwide.
Monika Hilton, known as Mo, is a scleroderma advocate, artist, culinary consultant, and founder of the Mo Experience Foundation. A former celebrity chef, she was forced to step away from the kitchen in 2018 when scleroderma affected her hands. Rather than retreating, Mo transformed her creativity into art and advocacy, writing her book I Decided and becoming a strong voice for Black and Brown women living with scleroderma. She is also an active member of our Scleroderma Advocacy Team, helping amplify patient voices and drive change.
Jim Stempel is the leader of the Scleroderma and the Lungs Support Group and has been a long-time scleroderma patient. He is also an active member of the 20% support group, a support group designed specifically for men with scleroderma. He is an active member of the scleroderma community and will bring his unique perspective into the conversation.
Surgical Approaches to Raynaud's
Cristin Coquillard, MD
Raynaud’s Phenomenon is a common symptom of scleroderma, and can greatly affect day-to-day life. Dr. Cristin Coquillard, MD will discuss surgical options that can offer lasting relief. She’ll be discussing four key surgical approaches that work to significantly reduce pain, slash the frequency of attacks, and in severe cases, prevent or even reverse the progression of ulcers and tissue loss. A powerful recent finding shows that most patients who have these surgeries wish they had done it sooner.
Cristin Coquillard, MD, is a plastic surgeon with advanced expertise in hand, wrist and upper extremity surgery. Dr. Coquillard also specializes in treating circulation issues affecting hands, often caused by autoimmune conditions like scleroderma and Raynaud’s phenomenon. Her surgical expertise includes spasticity treatment, upper extremity reconstruction and highly specialized approaches to nerve pain, such as targeted muscle reinnervation and regenerative peripheral nerve interface procedures. Dedicated to patient-centered care, Dr. Coquillard takes time to listen carefully to her patients, understand their concerns, and explain treatment options in clear, simple language. She makes sure patients feel comfortable asking questions and works with them to decide on the best path forward.
Scleroderma and Oral Health
Martin Hogan, DDS
Loyola University
Dr. Hogan will review the most common findings associated with scleroderma and oral health. He 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.
Dr. Hogan was born and raised in Windsor, Ontario and completed his dental school training at the University of Michigan in Ann Arbor. Following dental school, he completed his hospital-based dental residency at Northwestern Memorial Hospital in Chicago, Illinois. He is now the dental residency program director at Loyola University Medical Center in Maywood, IL. The hospital-based dental practice at Loyola has dedicated itself to treating medically and mentally compromised patients of all ages, both in the clinic setting and in the operating room. He is very passionate about resident education, hospital dentistry and has been active with the Scleroderma Foundation at the local, national and international level for many years.
Car-T Cell Therapy
Michael Macklin, MD
Director, University of Chicago Scleroderma Program
This talk will review the current status in the use of Chimeric Antigen Receptor T cell (CAR-T) therapy as well as hematopoietic stem cell transplantation (HSCT) for the treatment of patients with systemic sclerosis (SSc).
Michael Macklin, MD, PharmD, an assistant professor of medicine at the University of Chicago in the department of rheumatology. Michael obtained his PharmD at Albany College of Pharmacy and Health Sciences and his MD at the University of Pittsburgh. He completed his internal medicine residency at University of Pittsburgh Medical Center. He is originally from Long Island, NY. During his fellowship he has completed several reviews, and worked on clinical research projects in scleroderma and interstitial lung disease. Michael has an interest in scleroderma and rheumatic causes of interstitial lung disease. He is the director of the systemic sclerosis program at the University of Chicago and collaborates with the interdisciplinary interstitial lung disease program at the University of Chicago in addition to general rheumatology.
Scleroderma and Interstitial Lung Disease
Cathryn Lee, MD
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.
Scleroderma and Nutrition: Panel Discussion
Amanda Larrea, MPA, RDN, LDN
and
Susannah Baldock, MS, MPH, RDN, LDN
Take charge of your health! Scleroderma can present various issues that affect the GI tract. Learn invaluable insights into the role of nutrition in managing scleroderma, offering a unique opportunity to optimize your dietary choices and improve scleroderma symptoms.
Amanda Larrea graduated from Benedictine University with a degree in Nutrition & Dietetics. Her nutrition philosophy is that all foods fit. Food does more than just give us energy, it heals, it can help reduce or prevent chronic diseases, and it can bring people together. Understanding the unique nutritional needs and challenges that patients face allows her to work closely with them to create a personalized nutrition plan with evidence-based recommendations to support their treatment and overall health.
Susannah Baldock MS, MPH, RD, LDN is a Registered Dietitian and owner of The Roving Dietitian, LLC. In addition to 15 years of experience, she brings a unique dual perspective to nutrition for scleroderma because she currently thrives while living with limited systemic scleroderma, Sjogren’s disease, other autoimmune disease, and several chronic conditions.
Esophageal Symptoms and Treatment in Scleroderma
Nimrod Deiss-Yehiely, MD
Gastrointestinal symptoms are among the most common, and often most challenging, aspects of living with scleroderma. Join Dr. Nimrod Deiss-Yehiely as he clearly explains why esophageal problems occur in scleroderma, including muscle weakness (dysmotility), severe acid reflux, and slow stomach emptying. Learn what to expect from common diagnostic tests like endoscopy (EGD) and motility studies. Learn about advanced medications (like PCABs and prokinetics), managing related issues like SIBO, and when surgery might be considered. This session is designed to empower patients with knowledge, offering a clearer path to managing these complex symptoms and improving daily life.
Nimrod Deiss-Yehiely, MD, is a dedicated gastroenterologist, managing patients with general GI complaints and specializing in the management of swallowing disorders and other esophagus conditions. He sees patients with a wide range of symptoms, including acid reflux, and dysphagia (trouble swallowing). Dr. Deiss-Yehiely understands that conditions affecting the esophagus can significantly impact quality of life, social interactions and nutrition. Whether it's managing the discomfort of reflux disease, addressing the various treatment options for eosinophilic esophagitis or evaluating motility disorders with advanced testing, he works closely with patients to create personalized treatment plans. He takes time to listen, answer questions, and provide comprehensive care that empowers patients to take an active role in managing their conditions.
Relax & Move: Chair Yoga for Scleroderma
Brooke Hornbaker, Yoga Instructor
This gentle, chair-based yoga class is designed specifically for people with scleroderma. Participants will learn simple breathing techniques to calm the central nervous system, which can help relieve anxiety and depression, along with gentle movements to support digestion and circulation, and safe exercises for the hands and joints. All practices are slow, supported, and adaptable, with an emphasis on comfort, relaxation, and confidence. No yoga experience is needed.
Brooke Hornbaker is the owner of Just Be Yoga Studio in Downtown Naperville. Brooke practiced yoga off and on since 2000, but it wasn't until she was diagnosed with scleroderma that she really explored all the benefits of yoga. "I have had to make some major life changes after getting my diagnosis of diffuse scleroderma in 2018. Yoga has improved my quality of life as well as my mental state. I make sure yoga is part of my daily routine. When I was first diagnosed, I wasn't able to be active for too long without having to rest. Yoga has allowed me to work at my own pace and listen to my body. It has increased my strength, flexibility, endurance, and most of all, my life."
Pulmonary Hypertension
Stanley Swat, MD, MSCS
Assistant Professor of Medicine
Associate Director, University of Chicago Pulmonary Hypertension Program
Attendees will have the opportunity to learn about pulmonary hypertension, one of the most serious conditions that impact individuals with scleroderma. PH affects arteries in the lungs and the right side of the heart. It increases blood pressure in the blood vessels of the lung. This talk will give an overview of pulmonary hypertension alongside new research and treatments.
Dr. Swat is a board-certified cardiologist with expertise in advanced heart failure and transplant cardiology. He specializes in the care of patients with all stages of heart failure including those requiring mechanical heart pumps (left ventricular assist devices or LVADs) and heart transplantation. In addition, he specializes in the care of patients with pulmonary hypertension and right ventricular failure.His research focuses on identifying novel approaches to further improve cardiovascular health outcomes for patients with heart failure and pulmonary hypertension.
Achieving Wellness through Art Therapy
Jennifer La Civita, Psy.D., ATR
Associate Professor, Psychologist, Art Therapist, Department Chair
Adler University, Chicago
Managing chronic illness can create uncertainty and anxiety, taking a toll on our mental health. Art is a powerful tool with a range of benefits such as helping with pain management, alleviating discomfort, and fostering emotional and physical support. Adaptive art making increases self-efficacy, self-confidence, empowerment, and provides a helpful way to navigate scleroderma.
Dr. La Civita will guide you through this interactive session that explores the use of art and music as a form of wellness. Join her as she shares all sorts of adaptive art supplies, materials, and art processes that can be enjoyed by everyone!
Caring for Kids with Scleroderma
Join us for a unique event designed just for parents of kids and teens with scleroderma. We're bringing you a day that is equally engaging for kids and adults. You'll get your questions answered by experts in the field and there will be various opportunities throughout the day for kids to interact with their peers. Registration is free and meals are included.