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PATIENT EDUCATION CONFERENCE
~ Informs, Educates, and Connects ~

Carole Bernard
SFGWDC Executive Director Carole Bernard welcomes everyone to the conference

Gorman Auditorium was filled with a wonderful energy and a sense of community, as more than 50 people joined us for our first Scleroderma Patient Education Conference: Risk Factors for African Americans at Georgetown University Hospital on Saturday, October 17th.

Patients and caregivers from Maryland; Washington, DC; and Virginia had the opportunity to hear informative presentations from leading medical professionals, Dr. Virginia Steen, Dr. Laura Hummers, and Dr. Christine DeWitt.

Many thanks to everyone for attending! It was great to meet so many people, to hear your stories, and to receive your positive comments about the event. I also want to thank our presenters for sharing important information. I continue to learn about scleroderma, and I know others do as well.

A special thanks to Carolyn Fridley, Georgetown University Hospital Clinical Research Coordinator, for her help with the event logistics, and to Kerri Connolly, Scleroderma Foundation National Director of Programs & Services, for all of her support. I am also grateful to Mary Beth Tourbin, SFGWDC Board Chair for her assistance and participation in the event, and to SFGWDC Board Member Jennifer Loud and Volunteer Susan Rae for helping with set-up. 

We will continue to work hard to bring resources, information and support to scleroderma patients and their families! - Carole Bernard, Executive Director

CONFERENCE HIGHLIGHTS

Virginia Steen
Dr. Virginia Steen and Ingrid Dennis

"I was thrilled to see so many interested people at the conference," said Dr. Virginia Steen. "I am very optimistic for the future because of all the clinical trials that are happening in scleroderma, as well as the knowledge patients will have through the Scleroderma Foundation's educational programs, such as this one. Keep up the great work!"

Dr. Steen's presentation: How is Scleroderma Different in African Americans shared information about the frequency and outcomes of scleroderma in African Americans, specific clinical features and major problems that are different in African Americans, and possible reasons why these differences occur.

"Having had scleroderma for over 20 years, it can be easy to become complacent. Attending this meeting reminded me that there is always something new to learn," said Ingrid Dennis. "I found each speaker offered important and timely information. Finally, it was also nice to see some old friends and meet new ones. Looking forward to next year's conference."

Click here to download a PDF of Dr. Steen's Presentation

Hummers
Dr. Hummers and Richard Hodge with his wife, Kim

"I thought the meeting was a wonderful success. The participants were engaged and had great questions" said Dr. Laura Hummers. "It was a pleasure to be a part of this meeting."

Dr. Hummers discussed: Updates in Scleroderma Research. The presentation provided attendees with details about the significant progress that continues to occur in understanding the pathology and nature of the disease. She also talked about the exciting new treatments that are being evaluated.

"My wife and I are delighted to support the Scleroderma Foundation DC Chapter, which is so vital in supporting our area patients," said Richard Hodge, board member for the American Autoimmune Related Diseases Association.

"It's also vital that all autoimmune patient groups continue to work together to raise awareness and advocate for increased research into the family of autoimmune conditions."

Click here to download a PDF of Dr. Hummers' Presentation

"Thank you for the invitation to participate and a thank you to all of the attendees," said Dr. Christine DeWitt. "This was a great forum to spend the time addressing the unique concerns in skin of color that can often be overshadowed by other significant health concerns, but yet, these concerns still deeply impact a patient's quality of life."

Dr. DeWitt's presentation addressed: Scleroderma and Skin of Color: Unique Problems. She outlined the different skin concerns that arise for African American patients with scleroderma including digital ulcerations, dryness and itch, discoloration, and vitamin D needs.

Click here to download a PDF of Dr. DeWitt's Presentation

Panel Discussion

The second half of the conference program was a panel discussion and Q&A session with our presenters, led by SFGWDC Board Chair Mary Beth Tourbin.

There were insightful questions related to nutrition, dry mouth, products that are recommended, dental care, and skin ulcers. Our presenters did a fantastic job of answering the questions.

"We are pleased with the attendance for the conference. On behalf of the board, I want to thank everyone for coming and all of those involved in the planning," said SFGWDC Board Chair Mary Beth Tourbin.

"We know how valuable events, like this, and other educational forums can be for scleroderma patients and their families. The Chapter is committed to bringing you the resources that provide support, information and connections."

We also had representatives present from the Lupus Foundation, Pulmonary Hypertension Association, and the American Autoimmune Related Diseases Association. They brought literature and hand-outs for our attendees.

Thank you to our National Gold Sponsors: Actelion Pharmaceuticals US and Bayer HealthCare for their support of this event.