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Dr. Brenner at the scleroderma patient education conference and infographics

Scleroderma Patient
Education Conference

Saturday, October 21, 2023

Chicago, IL

8 am - 4:30 pm

About the Conference

You didn’t choose scleroderma, but you do have choices - and you’re not alone. We have experts to guide you, and a community of people to support you so you can make informed decisions and live better. 

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  • ​Hear the latest treatment options

  • Experts in pulmonology, gastroenterology, rheumatology & more

  • Find answers to your questions

  • Get inspired by a community that understands

  • Learn about small lifestyle changes to improve everyday life

  • Take a holistic approach to your health

Topics & Speakers

Hand Involvement - Calcinosis

Ultrasound and Scleroderma

Carrie L. Richardson, MD

Assistant Professor 

Northwestern University Feinberg School of Medicine

Rheumatologist - Northwestern Scleroderma Program​

dr. carrie richardson headshot
Dr. Duncan Moore headshot

Duncan Moore, MD

Assistant Professor 

Northwestern University Feinberg School of Medicine

Rheumatologist - Northwestern Scleroderma Program

 

Dr. Richardson has worked with the Northwestern Scleroderma Center 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 Scleroderma Center.

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Dr. Richardson's talk will focus on scleroderma's impact on the hands, particularly calcinosis. Attendees can expect to gain valuable knowledge that will empower them in their journey with scleroderma. This talk promises to be an invaluable opportunity for patients to deepen their understanding of these conditions and enhance their approach to managing scleroderma-related symptoms.

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Following Dr. Richardson’s presentation, there will be a short discussion of the use of ultrasound in systemic sclerosis with Dr. Duncan Moore. Dr. Moore graduated from the University of Washington School of Medicine in 2015. Since then, his focus areas for treatment include scleroderma, joint injections, interventional ultrasound, and gout.

Scleroderma and Nutrition

Bethany Marie Doerfler, MS, RDN

Clinical Research Dietitian

Division of Gastroenterology & Hepatology, Northwestern University Feinberg School of Medicine

Registered Dietitian Dr. Bethany Doerfler headshot

Bethany Doerfler, MS, RD, LDN is a registered dietitian whose clinical practice and research focuses on providing wellness-based medical nutrition therapy for digestive disorders and allergic bowel diseases. She currently practices in the Division of Gastroenterology and Hepatology at Northwestern Medicine in Chicago, IL. She is the first dietitian to be fully integrated into a gastroenterology division for both research and patient care. 

 

Attendees of her talk can expect to receive invaluable insights into the role of nutrition in managing scleroderma, offering a unique opportunity to optimize their dietary choices and improve scleroderma symptoms Ms. Doerfler's talk will be an excellent resource for patients and caregivers alike.

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Interstitial Lung Disease (ILD) and Clinical Trials

Bradford Bemiss, MD,

Associate Professor of Medicine

Northwestern University Feinberg School of Medicine

Dr Bemiss headshot.jpeg

Dr. Bemiss graduated from Loyola University Chicago Stritch School of Medicine and completed his fellowship at the Washington University School of Medicine. He has been in practice for over 10 years and has a subspeciality in Pulmonary disease and critical care medicine. 

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Dr. Bemiss will lead this informative session. Their talk will center around the crucial topic of interstitial lung disease (ILD). Attendees can expect to gain invaluable insights into the latest advancements in ILD management, potential treatment options, and the importance of clinical trials in advancing care for scleroderma patients. Following the ILD presentation, we have a panel discussion with Dr. Bemiss, Malek Shawabkeh, Kathleen Aren, Aaron Gundersheimer, and Alexandra Soriano to discuss upcoming clinical trials and answer your questions about participation. 

Pulmonary Hypertension (PH) 

Micheal J. Cuttica, MD

Associate Professor

Northwestern University Feinberg School of Medicine

Department of Pulmonology and Critical Care Medicine

Dr. Micheal Cuttica headshot
Dr. Ruben Mylvaganam headshot

Ruben Mylvaganam, MD

Assistant Professor

Northwestern University Feinberg School of Medicine 

Department of Pulmonology and Critical Care Medicine

Dr. Cuttica has extensive experience in pulmonary vascular conditions, interstitial lung disease, and obstructive lung disease. He is committed to a career in patient-oriented research for pulmonary vascular disease, stemming from his clinical experience developing and building the Northwestern Pulmonary Hypertension Program. He is also interested in exploring the mechanisms of PH in order to identify the disease early and potentially alter PH progression. Dr. Mylvaganam has over seven years of experience with pulmonology and critical care medicine. He graduated from New York University in 2015 and completed his residency at Mount Sinai. He holds a fellowship from the McGaw Medical Center of Northwestern University. His focuses are on chronic thromboembolic pulmonary hypertension, critical care, pulmonary embolism, and pulmonary hypertension. 

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Dr. Cuttica and Dr. Mylvaganam will co-lead an insightful talk on pulmonary hypertension (PH). Attendees will have the opportunity to learn about pulmonary hypertension, one of the most serious conditions that impact individuals with scleroderma. The talk will give an overview of pulmonary hypertension and potential treatment options.

Managing GI Symptoms in Scleroderma 

Dinesh Khanna, MD, MSc

Professor, University of Michigan

Rheumatology and Internal Care Medicine

President, Friends of World Scleroderma Foundation

Dr. Dinesh Khanna headshot

Dr. Khanna's contributions to the medical field are exceptional, as he leads international efforts to develop guidelines for managing scleroderma and has been instrumental in designing clinical trials for new treatments, resulting in the development of numerous drugs and the publication of over 550 peer-reviewed papers. He is the Director of the University of Michigan’s scleroderma program and in 2011, he received the Doctor of the Year Award from the Scleroderma Foundation. 

 

Dr. Khanna's talk will focus on gastrointestinal issues, which are commonly experienced by those living with scleroderma. This session is set to be an invaluable resource for patients and caregivers, as it will provide crucial insights and approaches to managing GI issues effectively. Dr. Khanna's vast knowledge and experience make this talk a must-attend event for anyone seeking to enhance their understanding and management of GI symptoms in scleroderma.

Workshop: Improving Mental Health with Chronic Illness

Tricia Saviano, MA, ATR, LCPC
Ellie Mental Health Clinic Director

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Ellie Mental Health

This interactive workshop will provide practical tools and tips for improving our mental and emotional health. If you’ve experienced feelings of sadness, anxiety, isolation, fear, grief, or depression since receiving your scleroderma diagnosis, you are not alone. We will discuss various mental health challenges that we face with chronic illness, particularly scleroderma. This interactive workshop will be led by the professionals at Ellie Mental Health.​

Hear What Past Attendees Have to Say

"Definitely go! You learn so much about the disease - all in one day. It’s comforting to talk to others with scleroderma. Makes you feel like less of an outcast."

Conference Schedule 

8 - 9 am Registration & Breakfast

9:00 - 9:15 Welcome & Opening Remarks

9:15 - 10:15 Dr. Cuttica and Dr. Ruben Mylvaganam, Pulmonary Hypertension

10:15 - 11:15 Dr. Richardson, Hand Involvement - Calcinosis, Dr. Moore, Ultrasound and Scleroderma

11:15 - 11:30 Break

11:30 am -12:30 pm Beth Doerfler, Scleroderma and Nutrition

12:30 - 1:15 Lunch

1:15 - 1:45 Workshop: Mental Health and Chronic Illness Part 1

1:45 - 2:45 Dr. Khanna, Managing GI Symptoms in Scleroderma

2:45 - 3:00 Break

3:00 - 3:30 Workshop: Mental Health and Chronic Illness Part 2

3:30 - 4:30 Dr. Bemiss, Interstitial Lung Disease and Panel Discussion of Clinical Trials

4:30 pm Closing Remarks

Location and Parking

LOCATION:

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Gleacher Center

Conference Center 

450 Cityfront Plaza Dr

Chicago, IL 60611

For full parking information and pricing click here

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Covid-19 Guidelines

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 provided and strongly encouraged, especially in common areas where social distancing is difficult. 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. 

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