For advocates, training, preparation critical to successful Capitol Hill visits

April 25, 2012

More than 750 attendees of the Alzheimer's Association Advocacy Forum took to Capitol Hill on Wednesday, both excited and anxious for the day ahead as they anticipated meeting with elected officials to ask for their support of Alzheimer's-related legislation.

In many instances, the training and preparation Advocates receive at the Forum are critical to achieving a successful outcome in meetings with elected officials, especially when things don't go exactly as planned.

Advocates from the Oklahoma-Arkansas Chapter were scheduled to meet with Sen. Coburn (R-Okla.), but had to quickly adjust when the senator's schedule changed. Instead, they met with the senator's legislative aide, Gabe Sudduth.

"You just have to be flexible and ready to adjust," said National Board Member and Forum Co-Chair Jackie Kouri, a member of the Oklahoma-Arkansas delegation. "[Sudduth] was new to his position, so we had to give him some background on our priorities. With the senator, we would have been more direct."

Added Christan Leikam of Tulsa, Okla., "We needed to review the basics, but we are more than happy to provide him with an education on Alzheimer's!"

The delegation asked Sudduth to relay their requests, specifically asking the senator to sign on as a co-sponsor the Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act, which would improve detection, care and planning for people with Alzheimer's; and for his support of a strong, accountable National Alzheimer's Plan with the resources necessary to change the trajectory of the disease, including $100 million in Fiscal Year 2013.

After sharing some of their personal experiences with Alzheimer's disease, Kouri wrapped up the meeting by stating, "I know the senator's position on fiscal responsibility, but we are here to convey there is a need to commit resources now — it's an investment in the future.

Alzheimer's Association Advocacy Ambassadors Beverly and Bill Miller of Salt Lake City, Utah, had a different experience during their meeting with Sen. Orin Hatch (R-Utah). First-time Forum attendees Beverly and Bill were inspired to get involved with the cause after Beverly was diagnosed with Alzheimer's in 2010.

Beverly, once the award-winning director of Utah Clean Cities, a statewide nonprofit, worked with Sen. Hatch in her former career. The disease has since left her unable to maintain employment.

"It's devastating, all of the things she used to be able to do that she can't do now," Bill said. "She can no longer write, drive or use the computer."

Sen. Hatch clearly recognized Beverly from their previous professional relationship and greeted her warmly.

"I'm into another cause now, senator, and it's me," Beverly said. "No one is safe from this disease."

After thanking Sen. Hatch for his support in the passage of the National Alzheimer's Project Act (NAPA), Beverly and Bill, joined by Harry Johns, president and CEO of the Alzheimer's Association, asked for the Senator's help to make sure that the resources in the plan created by NAPA is sufficient to tackle Alzheimer's.

Hatch affirmed his support, stating, "We want to make sure whatever resources are being put [into the plan] are used correctly."

Sen. Hatch was clearly affected by the news of Beverly's diagnosis and pledged, "Count on me to do what needs to be done."

Beverly and Bill were pleased with the outcome of the meeting.

"I was stunned by the Senator's immediate interest," Beverly said. "I think it made it different for him, me being the face of the disease."

"The Forum really helped us increase our intensity when it comes to asking for what we need," Bill added. "And we bonded with a huge group of advocates from around the country."

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