"We Believe" We Had an Excellent Conference

Samantha Murray, SF National Youth Ambassador (center), had a wonderful time at the 2007 National Conference with her grandmother Linda (l), and her mom Stacy (r)

The Scleroderma Foundation theme for 2007 is “I Believe,” and based on written evaluations, conversations, and the many smiles seen last weekend in Philadelphia, we believe the National Conference was a resounding success.

Nearly 450 patients and their families, National staff, members of the Board of Directors, exhibitors, and Delaware Valley Chapter volunteers participated in the conference, held in one of America’s greatest cities, Philadelphia. People from 39 states and two countries—Canada and England—took part in the three-day event, which started with an reception Friday, July 20, and closed with a keynote speech on research developments from Sergio Jimenez, M.D., a rheumatologist and researcher.

The conference had many highlights, but the primary reason so many people attended was to learn more about scleroderma and how to cope with it. The speakers did not disappoint.

“The speakers at the workshops we attended were wonderful,” said Leni Schulz, the support group leader in Youngstown, Ohio. This is the fifth conference Schulz attended, and it was the best, she said.

Foundation staff secured a who’s who of scleroderma experts to lead workshops and true to form they delivered excellent results. Among the speakers were Maureen Mayes, M.D., author of “The Scleroderma Book,” Rick Silver, M.D., who was named Doctor of the Year, Daniel Furst, M.D., John Varga, M.D., last year’s doctor of the year, and Thomas Medsger, Jr., M.D.

A workshop on nutrition and scleroderma by Mary Ann Nirdlinger, M.D., the mother of Chapter and Support Group Manager Krissy Nirdlinger, drew an overflow crowd, and two workshops on gastrointestinal issues from Cuckoo Choudhary, M.D., drew large audiences as well.

More than 150 people attended a stem cell transplantation panel led by Silver, who moderated it, and featured panelists Furst, Medsger and Walter Barr, M.D., of Northwestern. The workshop addressed the types of procedures, how they differ, results of studies, and criteria for selection. Time was left at the end of the session for a question-and-answer period.

Other workshops were informative as well. Former board member Mary Ann O’Neil, herself a person living with scleroderma, offered a talk on humor that put members in a jovial mood, while the dynamic Cindy Coney gave a talk on stress that engaged her attendees. Other workshops drew positive remarks.

Janet Austin of the National Institutes of Health and a person who lives with rheumatoid arthritis, provided an emotional yet funny introductory keynote address.

While education was a key component to the weekend, making new relationships or
renewing existing ones, was on the minds of many attendees. A huge show of hands went up when Foundation Chief Executive Officer Frannie Waldron asked how many first-time attendees were at the conference. New attendees could ask each other about their experiences, or others who have been to previous conferences. Most importantly, they could exchange phone numbers, addresses, and e-mail addresses as a way to maintain communication and enhance their support systems.

“I am here not only to bring back information to my support group, but to meet people in the same situation, all of whom have amazing stories to tell,” said the spunky Lisa Wheatley of Kansas.

Saturday night was an awards dinner, which started with kind words from Jack Lawler from Actelion Pharmaceuticals, the conference platinum sponsor and sponsor of the awards dinner.

“I am constantly in awe of the great job the Scleroderma Foundation does in its commitment to patients and their families in the area of patient advocacy, public awareness, patient support, and education,” said Lawler.

Foundation board chair Joseph Camerino thanked Lawler and the Actelion team for its financial commitment to not only the conference, but the many nationwide "Stepping Out to Cure Scleroderma" walks.

Two scleroderma registries, including a new morphea registry, drew big crowds from attendees.

At the end of the awards ceremony, Frannie Waldron announced that the 2008 conference would be held on July 25–27 in Manhattan Beach, Calif.