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Lupus and Autoimmune Conditions Patient Forum

Our Lupus and Autoimmune Condition Patient Forum was held, May 10th, 2014

 This was an amazing, interactive discussion and presentation with experts in the field!

Lupus Awareness Day

This educational forum was a place for patients, caregivers and advocates of anyone living with lupus, an autoimmune disease or chronic condition to come together as a community as we work to increase awareness and educate ourselves and others about these conditions. We engaged in interactive discussions, presentations from leaders in the field, and learned about programs and organizations supporting patients and their families on their journey. The day was kicked off with our keynote speaker, Dr. Donald Thomas, giving his inspiring and informative “Lupus Secrets” talk.  Please see below for the videos from this amazing event.

 

 


 

Please enjoy this three part video series featuring Dr. Thomas, author of The Lupus Encyclopedia, as he shares his “Lupus Secrets”. 

Part 1: Lupus Secrets

Part 2: Lupus Secrets

Part 3: Questions and Answers with Dr. T

About the Key Note Speaker:

Donald E. Thomas, Jr., MD, FACP, FACR

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Dr. Donald Thomas is a rheumatologist with a special interest in lupus. He is in private practice with Arthritis and Pain Associates in Greenbelt and Clinton, MD. He has been an active member of the Medical Scientific Advisory Council for the DC/MD/VA chapter (and the previous Greater Washington chapter) of the Lupus Foundation of America since 1999 and currently serves as its Chair. In addition to his love of taking care of patients, he also loves teaching other physicians about rheumatology issues as an Assistant Professor of Medicine at the Uniformed Services University of the Health Sciences in Bethesda, MD. He is a strong advocate for people who have lupus and is the author of the upcoming book from Johns Hopkins University Press entitled “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families.

 

 


 

Panel Discussion:

We invited BJ Cavnor, Anita Noble, Liz Ore-Bedel and Tami Stackelhouse to discuss the patient perspective on conditions including but not limited to lupus, rheumatoid arthritis, scleroderma, multiple sclerosis, and fibromyalgia.

They unraveled a few of the most critical questions that people struggling with chronic and autoimmune conditions face:

  1. Affordable care: How the Affordable Care Act and new insurance laws help people living with autoimmune conditions.
  2. How to be your own best advocate: self-care for people living with autoimmune conditions.
  3. Accessing care: advice to help access medications and treatment people living with autoimmune conditions.

Panel Discussion Video: 

About the Panelists:

BJ Cavnor

Executive Director, One in Four Chronic Health

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BJ Cavnor is the founding Executive Director of One in Four Chronic Health. Mr. Cavnor previously served as the Director of Policy and Advocacy at Lifelong AIDS Alliance in Seattle, and continues to serve as provide legislative and policy assistance for Cascade AIDS Project, in Portland.  Mr. Cavnor served as Vice-Chair for the Oregon Health Insurance Technology Oversight Committee (HOTOC)’s Legal & Policy Workgroup. He has been working on issues of health care policy including; patient rights, affordability and treatment access for more than two decades. Mr. Cavnor has been living with HIV for more than 18 years, which has helped to shape his work on behalf of all people living with, or impacted by, chronic health conditions.

Anita Noble

Facilitator, Molly’s Fund Fighting Lupus

Molly’s Fund Fighting Lupus board member since 2009 Anita Noble brings over 30 years of working with at risk youth.  Ms. Noble has a B.A. degree in Speech Communications with a minor in journalism in which she has had employment with the Chicago Sun Times, NPR Radio and ABC & NBC affiliates.  Anita was diagnosed with lupus over 18 years ago.  As a native Oregonian, she is the proud mother of 3 children and the grandmother of eight.  Anita is passionate about telling those with lupus how to discover their new normal and how to live their best lives with lupus.

 

Tami Stackelhouse

Certified Health Coach and Co-Leader of the Fibromyalgia-ME/CFS Support Center, Inc.

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Tami Stackelhouse encourages hope and healing for fibromyalgia and ME/CFS patients as a coach, advocate, and co-founder of the Fibromyalgia-ME/CFS Support Center, Inc. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style help chronically fabulous patients take control of their lives.

 

 

 

 

Liz Orem-Bedel

President, Scleroderma Foundation- Oregon Chapter

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Liz has been a Scleroderma patient for twenty years and attended her first support group meeting shortly after her diagnosis. Liz is the immediate past president of the Scleroderma foundation, Oregon Chapter. A foundation that joined forces with the National Scleroderma Foundation, based in Boston, Ma. for more than a decade. She helped create a board of directors as well as served as president of the board for over fifteen years. She has served as an officer and member of 5 separate board of directors.   She participates in all facets of The Scleroderma Foundation’s mission statement of support, education and awareness.

 

Please direct any questions to Tracie Stone at [email protected] or call 503-775-3497.

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Article by : Karrie Sundbom

Karrie is the Digital Marketing Manager at Molly's Fund and responsible for innovating content for all of Molly's Funds online communications, creating memes and graphics, writing the MFFL Newsletter and main lupus blogs, as well as developing and managing the content for all of our social media platforms. Connect with Karrie on LinkedIn and Google+ .
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