Scleroderma Patient
Education Conference
Saturday, May 4, 2024
Oakbrook, IL
8am - 3:30pm
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 scleroderma treatment options
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Learn from experts in scleroderma management
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Find answers to your scleroderma questions
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Get inspired by a community that understands
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Learn about small lifestyle changes to improve everyday life
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Learn a holistic approach to reducing scleroderma symptoms
Thank you to our sponsor
Please register by April 26
Topics & Speakers
Scleroderma: Treatment Options and a Look to the Future
Michael Macklin, MD
Assistant Professor, University of Chicago
Director, Systemic Sclerosis program at the University of Chicago
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Overview of scleroderma manifestations, organ involvement, brief classifications (limited, diffuse, sine scleroderma)
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Overview of current treatment options, need for additional therapies
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Overview of plan for multi-disciplinary scleroderma center at the University of Chicago
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Potential future therapies in the literature at large
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Planned trials/future treatment options at the University of Chicago
Pain Resilience and More Rewarding Self-Management
Afton Hassett, PsyD
Associate Professor, Anesthesiology
Clinical Psychologist, Anesthesiology
Director, Clinical Pain Research
University of Michigan
Chronic pain is common. If we don’t suffer from it ourselves, chances are we know someone who does. Changes in the structure and function of the brain are thought to underlie chronic pain. The good news is that these changes are not hardwired. Many things can be done to influence how the brain processes pain signals including exercise, healthy eating, and better sleep, as well as thinking more adaptive thoughts, positive emotions, and feeling love and connected. This session will highlight the neuroscience related to chronic pain and how engaging in simple self-management strategies can result in less pain and a more rewarding life.
Motion is Lotion:
the Importance of Hand and Face Exercises and Protection
Janet Poole, PhD, OTR/L
Division Chief, Professor and Program Director, Occupational Therapy Graduate Program
This session will discuss modalities and demonstrate exercises to improve movement and function in the hands, face and mouth. Suggestions will be also be provided on the use of assistive devices and alternate techniques to accomplish tasks of daily living to increase independence and protect the hands.
Take Back Control: Moving Forward with Scleroderma
Gregory Cohen
DrPH, MPH, NBC-HWC
This interactive session will help you to become your own personal advocate when it comes to your health goals and quality of life as it relates to what YOU can do on a daily basis. Greg is an expert when it comes to lifestyle behavior change and prevention. He has also been living with scleroderma for several years and understands the challenges that this disease presents. This session will help you to uncover your why, reflect on the reasons that hold you back, and encourage thought-provoking ways to set realistic goals that can fit into any facet of your life to make improvements or simply achieve what you wish to achieve. Whether you want to run a marathon, walk a mile, eat healthier, or reduce your stress, setting goals and having a positive mindset is the first step. Greg is a nationally board-certified health and wellness coach working with clients to change their lifestyle behaviors to improve their health and other aspects of their lives. He decided to focus on Lifestyle Management and Preventive Care as a way to help individuals battling various illnesses improve their overall health and quality of life.
What You Need to Know about Scleroderma & Lung Disease
Kavitha Selvan, MD
Interstitial lung disease (ILD) is a common complication of scleroderma that leads to inflammation and scarring of the lungs. In this session, we will review the prevalence of scleroderma-associated ILD (SSc-ILD), classic symptoms, and the approach to evaluating patients with suspected disease. In addition, we will cover various treatments available for patients with SSc-ILD.
Please register by April 26
SCHEDULE:
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8 - 9 am - Registration & Breakfast
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9:00 - 9:15 - Welcome & Opening Remarks
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9:15 - 10:15 - Motion is Lotion: the importance of hand and face exercises and protection
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10:15 - 11:15 - Pain Resilience and More Rewarding Self-Management
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11:15 - 11:30 - Break
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11:30 am -12:30 pm - Scleroderma: Therapies for Today and Beyond
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12:30 - 1:30 - Lunch
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1:30 - 2:30 - Take Back Control: Moving Forward with Scleroderma
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2:15 - 3:30 - What You Need to Know about Scleroderma & Lung Disease
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3:30 pm - Closing remarks
LOCATION:
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Hyatt Lodge Oak Brook
Conference Center
2715 Jorie Blvd
Oakbrook, IL 60523
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Free parking
Please register by April 26
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 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.