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In this issue, Jayme Kornfeld, the new president of the Foundation's Northern California Chapter and a patient living with limited systemic sclerosis, describes her first experience visiting with leaders on Capitol Hill with "Voice" readers.

A team of scleroderma advocates visited Washington, D.C., to meet with legislators in February for the Scleroderma Foundation’s National Congressional Call-in Day. These dedicated scleroderma supporters, many of them patients, told their personal scleroderma stories to their congressional leaders and staff members. The group also hand-delivered thousands of signed petitions, asking elected leaders to co-sponsor the two bills that make up the “Scleroderma Research and Awareness Act.”

About the “Scleroderma Research and Awareness Act”

This bipartisan legislation is made up of two bills: H.R. 1672, introduced in the House by Rep. Lois Capps (D-Calif.) and Rep. Lee Terry (R-Neb.); and S. 649, introduced in the Senate by Sen. Kirsten Gillibrand (D-N.Y.). The legislation proposes increased funding for scleroderma research and awareness campaigns.

Wednesday, Feb. 8

8 a.m. – Just met the other patients that are going on the appointments today. I ate a hearty breakfast because I know I’ll need the energy to keep going all day. Our schedule is packed with appointments every half hour. This is going to be a very fast-paced day.

9:30 a.m. – At Sen. Roy Blunt’s (Mo.) office. The office is small and buzzing with activity. I listened attentively as Mary Blades, president of the Missouri Chapter, and Darren Webb, a lobbyist from the Health and Medicine Counsel of Washington, took the reins. They each spoke about the bill and its importance. Before I knew it, it was time to move on.

10 a.m. - We split up for the next meeting. I joined Evan Busman, a support group leader from Atlanta and board member of the Georgia Chapter, and headed to Sen. Johnny Isakson’s (Ga.) office. We talked about the difficult process of diagnosis and how it can take a really long time with diseases like scleroderma. We found a connection with one of the senator’s assistants, which was crucial. A member of the Senator’s staff

just had been diagnosed with lupus and went through all of the uncertainty that goes along with the diagnosis. Now, I know he will remember us.

2012 Blades Busman Kornfeld Georgia DC Visit

Mary Blades, Missouri Chapter President; Jayme Kornfeld, Northern California President; Evan Busman, Atlanta Support Group Leader; and Darren Webb, lobbyist with Health and Medicine Counsel of Washington; met with Rep. John Lewis (Ga.) to discuss the “Scleroderma Awareness and Research Act.”

12:30 p.m. - Up next is Rep. Lynn Woolsey from California. Funny enough, we didn’t have anywhere to meet, so we had our meeting standing in the hallway. Rep. Woolsey was a co-sponsor of the bill, so we spent our half hour sharing our stories and thanking her office for all of their support.

1 p.m. - Quick change in the schedule. Sen. Dianne Feinstein’s office (Calif.) was able to see us at the last minute. Being from California, I would do the majority of the talking. I immediately found a connection with Sen. Feinstein’s assistant, as we called the same town “home.” During this meeting, I talked about my career being cut short by my disease. The assistant seemed to understand, and we walked out feeling that a good word would be passed on to Sen. Feinstein.

3 p.m. - What an incredible meeting! We lucked out and met with Rep. John Lewis (Ga.) himself. He was SO nice and really seemed to want to support us and go to the next walk in Atlanta. What an honor it was to meet him. We were all a little star-struck.

5 p.m. - The end of a very busy day. Among all of the teams, there were 38 appointments in all. It was great to see how the legislative process works and to know I can make a difference. I am exhausted, but I would do this all again in a heartbeat!  


We urge the scleroderma community to reach out to their elected officials. The best way to reach your elected officials in the House and Senate is to call the U.S. Capitol Switchboard at (202) 225-3121. An operator will connect you to your representative or senator's office.


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