Conference Roundup: Many New Attendees, Excellent Workshops

Frannie Waldron, Scleroderma Foundation Acting Executive Director and Pablo Przygoda, Actelion Pharmaceuticals Product Manager. Actelion was the Platinum Sponsor of the National Conference.

The 2006 Scleroderma Foundation National Conference featured many new attendees, and a wealth of information intended to help patients and their families manage the disease. More than 300 people attended the conference, about two-thirds of whom were first-timers to the event. The newness gave this year’s conference a sense of energy that could bring some change to local chapters and support groups.

The Scleroderma Foundation would like to thank all of the Minnesota volunteers, especially Bev Woo, and Bonnie and LeeRoy Jones who coordinated the event. Their help in putting this conference together was invaluable.

“There was some really great information presented in the quality of life workshop,” one patient wrote following the workshop done by Dr. Dinesh Khanna. “I found it very, very informative and it will be helpful as I work in my support group.”

The weekend started Friday night, July 26, with a reception for the 250 people who drove or flew in the day before the conference started.

Featuring music by a disc jockey, the reception was a time for old friendships to be renewed and a little fun. There were some games as well as dancing and a light buffet.

The conference officially opened the next morning with a rousing address from Roberta Diddel, founder of Psychology Works, an organization dedicated to helping people cope with the affects of chronic illness.

Her talk was titled, “The Tinkerbell Effect: How Positive Thinking Can Save Your Life.” Diddel has dealt with chronic illness herself and is confined to a wheelchair. In her message she shared research and personal stories of how developing and maintaining a positive attitude can help overcome the challenges a disease like scleroderma can pose.

The talk was more than a message that directed people to be positive and happy. This message was meant to show those in attendance how creating a life with purpose—even a small purpose—can help create a positive attitude that will enable one to overcome difficulty.

These comments struck a chord with many in attendance, who gave Diddel a standing ovation at the end of her talk.

For the rest of the morning and into the afternoon, workshops were offered about Raynaud’s, lung involvement, overlap syndromes with scleroderma, yoga, hand surgery, sexuality, and many others.

The Saturday workshops, including the Hospice and End of Life Issues and the one on sexuality were received very positively by attendees.

The annual awards dinner was held that night and during this time people were able to mingle, learn a few facts about the Foundation (thanks to a presentation titled “Did You Know?”) and also view the new television PSAs featuring Lauren Beeson, Cathy Koch and professional golfer Bobbi Salmon. (Read about the award winners.)

The second day of the conference started with workshops, and topics such as Sjögren’s, the emotional impact of scleroderma, Medicare/Medicaid issues, and wound care.

But the highlight of conference is always the final keynote address, delivered this year by Dr. Dan Furst of UCLA.

In an address titled “Scleroderma; A Treatable Disease,” he detailed for everyone the recent history of research done in scleroderma and candidly addressed the issues of what seems to work and what doesn’t work.

Furst talked about treatments such as methotrexate/cyclophospahmide; interferon; bovine collagen; 5-FU; and stem cell transplantation. In each area, he talked about research, what it showed (and if it mattered); and what treatments actually seem to provide real improvement for patients.

“This is a very important topic! And it is the main reason I attend the conference, to learn what’s new,” one person wrote.

We're finalizing location details for the 2007 National Conference. Once confirmed, we will announce the location on our website, and in the eLetter and "Scleroderma Voice" magazine.

Conference Photos