April 2011 Monthly Message
- He Did It His Way: PAN’s Chairman of the Board on Business, Philanthropy, and Opportunity 
- Turning a Difficult Meeting into a Successful Advocacy Experience 
- Medtronic and Eli Lilly Announce Drug-Device Collaboration for Parkinson’s Disease 
- April is Parkinson’s Awareness Month 
- PAN Advocate Jean Burns Given Bonander Award at Unity Walk 
- PAN Director of Development / Individual Giving Featured on Comcast Newsmakers 
- SAVE THE DATE – 2011 Morris K. Udall Awards Dinner 
- Parkinson’s in the Media 
When San Antonio’s Corey King and other PAN Texas advocates joined together in February at the 2011 Research & Public Policy Forum in Washington, DC, they hoped their meetings on Capitol Hill with Members of Congress and their staffs would go well. They wanted to tell their personal stories about living with Parkinson’s disease, and make sure their legislative requests were made before the meeting was over.
The second meeting of his group was with a staff member in Senator Kay Bailey Hutchison’s (R-TX) office. After settling into one of the Senator’s conference rooms, the meeting began with casual conversation, then turned serious with their requests of Sen. Hutchison’s legislative staffer.
“I was surprised and shocked by [the staff member’s] reaction and comments,” said King. She told us we shouldn’t be reaching out to the federal government for our needs because this was a very difficult time in the federal government to be requesting funds for programs.”
Such a response would be jarring to anyone, but King, who is new to Parkinson’s advocacy, was especially taken aback. “I believe most of us were shocked and surprised at such a blunt rejection of our requests,” he said.
When the staff member suggested that venture capital might be a better route to try, rather than pursue federal funding of basic research through the National Institutes of Health (NIH), King and his group were stunned. “By that point, I was almost speechless with surprise,” he said. Shortly thereafter, the staffer quickly ended the meeting and the group found themselves standing in the hallway waiting for an elevator.
“Did we just get thrown out of a United States Senator’s office,” they asked each other. While that may not have been the case, they were left feeling uneasy about what had just happened. Why was the staff member so abrupt? How should they respond to this?
King and his group finished the rest of the meetings on their schedule (which went quite well) and returned home to Texas the next day. But, he could not forget that meeting with Sen. Hutchison’s office; it stuck with King so much that his wife told him to do what he thought was right.
He followed up with the Senator’s office by writing a very candid email to the staff member he’d met with. Her response a few days later helped reassure King.
“In her email, she thanked me for my candor, and told me that she was very sorry that we had taken that perception away from our meeting,” he said. “She suggested that we get together on the telephone to have a conversation about our perceptions and to try to resolve the issues that I described in my email.”
On the teleconference, King was joined by members of his advocacy contingent from the original meeting and two staffers from Sen. Hutchison’s office, including the staffer with whom they’d had the original meeting. They “spoke about how stressful [the week of the Forum] was on Capitol Hill with an impending government shutdown due to budget issues, and that those high stress levels may have led to a less-than-welcoming reception,” said King. “We thanked [the staff member] for her apology and accepted it.” The other staff member then shared a personal story about the struggles that his brother is having with Parkinson’s disease. “He told us that he knows very well how the disease impacts families and individuals,” King said, “and that he personally had compassion for us and supported us in our efforts. I think each one of us was touched by this personal disclosure, and we thanked him for his honesty.”
After that, the conversation turned to the business of the requests that were originally made in their first meeting. King and the others certainly were interested in moving in a better direction with the Senator’s office, as were the staff members.
King asked them to do the following things:
King and members of his advocacy team were pleased with the progress made during the phone conversation. But, he noted, “None of the commitments that we ended up getting would have been difficult to make at that initial meeting.”
“The main reason I felt the need to act in this particular circumstance was that it stood in such stark contrast to the other meetings we had that day. In our fight to ease the burden and find the cure for Parkinson’s disease, we may not always get the public attention, the government support, the funding, nor the results we would wish. I will continue to insist, however, that we are not ignored, marginalized, or disregarded.”
We commend Corey and the other Texas advocates who knew not to give up, and, in fact, persevered to bring about a productive exchange of ideas and requests that resulted in Senator Hutchison and her staff learning more about Parkinson’s disease, and hearing about our community’s legislative concerns.