April 2010 E-Newsletter - Sam Erwin, Iowa State Coordinator

     On a cold, snowy January day, few people in Iowa were willing to venture far from home.  Rather than take the chance of sliding into a ditch, most people stayed put.  One person who did brave the conditions was U.S. Senator Chuck Grassley (R-IA).  Sen. Grassley had scheduled a meeting with a group of constituents at a local hospital in Iowa, and he was going to honor that commitment.
PAN Coordinator Sam Erwin had contacted Sen. Grassley's office months earlier about scheduling a meeting with the Senator.  A group of people living with Parkinson's disease wanted to speak with the Senator about issues important to them, even though the topic consuming the country at that time was the health care reform debate.
"The weather was horrible that day," said Erwin.  "But Sen. Grassley still showed up, and so did everyone who was scheduled to be there."
Erwin wanted to speak personally with Sen. Grassley, as did members of the group, to discuss many issues affecting the Parkinson's community, including the National MS and Parkinson's Disease Registries Act.  It was important to the group to discuss the challenges and issues they face everyday while living with Parkinson's.
"He gave us an hour of his time, out of his busy schedule," said Erwin.  "He really did listen to all of our questions and he helped explain the process of the government."
What Sen. Grassley did do that day was explain some of his positions on key policy issues, while also informing his constituents about the inner-workings of the government.  He was quite cordial, but also made clear that many agencies control policy in the government, not just the Senate.
"We asked Sen. Grassley to sign onto the registries bill, and he did," Erwin said.  "We contacted one of his aides after the meeting, and he officially became a cosponsor of the bill."
Erwin and her group knew it was important to secure Sen. Grassley's support for the registries bill.  They also knew it was important for him to learn more about how people with Parkinson's disease live on a daily basis.
"It is important to recognize that people with this disease can't continue on as before," she said.  "Many in the group focused on medication, but it is important for people in the government to know that these are the people actually living with the disease."
Erwin hopes to take up Sen. Grassley on his offer to reconnect later this year via conference call.  She plans on contacting his office to schedule a time this spring or summer to continue discussing these issues with Sen. Grassley and his staff.  In the meantime, she remains committed to working in her local communities in Iowa, engaging grassroots advocates to have their voices heard.
"People are looking to do more," she said.  "It can be overwhelming or a good burden, but it is very good to know they are not standing by themselves."
Senator Charles Grassley (R-IA) meets with a group of Parkinson’s advocates, including Iowa Congressional Coordinator Sam Erwin (back row, right), in January.  Senator Grassley indicated his support for the National MS and Parkinson’s Disease Registries Act (S. 1273 and H.R. 1362) while meeting with the group.

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