SSF members share their stories with key legislators

SSF members Rhoda Dennison, Arthur Grayzel, MD, Kathy Hammitt, Edythe Jablonsky, Donald MacKeen, PhD, and Della McCaughan visited more than a dozen key legislators during June. Their message was simple: Sjögren’s syndrome is a serious disease about which too little is known, and funding basic research into Sjögren’s and related autoimmune diseases is the key to a better future for all people with Sjögren’s.

In Washington, DC, the SSF representatives visited key members of the committees that determine the funding for the National Institutes of Health (NIH), including Senators Thad Cochran (R-MS), Dianne Feinstein (D-CA), Bill Frist, MD (R-TN), Tom Harkin (D-IA), Trent Lott (R-MS), and Patty Murray (D-WA), and Representatives Nita Lowey (D-MD), Ralph Regula (D-OH), Henry Waxman (D-CA), and Roger Wicker (R-MS).

The entire Mississippi congressional delegation greeted SSF with more than the usual Southern hospitality; SSF member Della McCaughan is a former science teacher who served as a Congressional Einstein Fellow with Sen. Cochran. Senators, representatives, and their aides were moved when they heard how Della’s service to the citizens of Mississippi has been curtailed by her Sjögren’s.

Personal contacts such as Della’s are tremendously important in helping legislators understand the human aspects of Sjögren’s and recognize how much is needed in the way of awareness, education, and research. When New Yorker Edythe Jablonsky met Senator Hillary Clinton (D-NY), the senator not only sympathized with Edythe, but expressed interest in assisting the Foundation with our requests. SSF past president Arthur Grayzel, MD, joined Edythe and her husband, Douglas Jablonsky, a vice president of Montefiore Hospital, in a conference with the Senator’s deputy state director.

Increasingly, our message is being heard. Senator Barbara Boxer (D-CA) has joined the ranks of legislators who recognize the personal and societal cost that diseases like Sjögren’s have. She has written a bill calling for the establishment of a coordinating center within the Department of Health and Human Services to oversee all efforts regarding autoimmunity at NIH, the Food and Drug Administration, and the Centers for Disease Control.

A delegation from the American Autoimmune and Related Diseases Association - including actress Kellie Martin - joined SSF in some of the visits in Washington.

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