The record-setting blizzard that dumped two feet of snow on Boston in January did not deter hundreds from attending a series of special events for neurology patients and caregivers, top regional neurologists, elected government officials, and corporate leaders. Judging from the success, say American Academy of Neurology (AAN) officials, more events are on the way.
Theme for Public Education
The theme for the special events in January was Think Neurology Now. Sponsored by the AAN Foundation, which raises funds–and public awareness–about neurological disorders, Think Neurology Now set out to inform the general public about the complexities of neurological disorders and the importance of quality of life for people living with neurological diseases. And most agree it met that goal–and then some–complete with break-out educational sessions about neurological diseases, proclamations from state and local officials, and face-to-face meetings with legislators on Beacon Hill.
Think Neurology Now got a very public launch when Massachusetts Gov. Mitt Romney and Boston Mayor Thomas Menino declared January “Think Neurology Now Month.”
Break-out Education Sessions
Twelve days later, a Town Hall meeting sponsored by the AAN Foundation drew 140 patients and caregivers to the Hynes Convention Center for a day of learning about neurological disorders. Leading neurologists–all experts in their field–highlighted research and treatment advances in multiple sclerosis, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), epilepsy, Parkinson's disease, stroke, migraine, and rare neurological disorders, among others.
“These disorders affect the way people think, move, reason, sense, learn, communicate and are very visible to others,” said Kenneth Viste, M.D., an Oshkosh, Wis., neurologist and chair of the AAN Foundation, in welcoming remarks. “As you know from personal experience, a neurologic diagnosis means a fundamental change, often a very difficult change, in the life of the patient, and particularly in the family and the care partners.”
Acclaimed actress Teri Garr then brought the house down when she spoke of her battle with multiple sclerosis, delighting the audience with her characteristically wry humor and candor.
“Most of us, when we got this disease, couldn't even spell ‘multiple sclerosis.’ I still can't,” she said. “I can barely even say it a bunch of times. I think they should change the name of it–to something like Ticklety Bumpty Boom. You get a little tickle on your side, you bump into something, and then boom–you fall! So, it's Ticklety Bumpty Boom.” Turning serious, she told her audience: “What I'm trying to say is that we need to keep talking to each other and telling each other how we feel, how we deal with our bodies and our feelings.”
Meetings with Legislators
And there was still more to come. On Jan. 25, representatives of several advocacy groups, including patient volunteers, converged on Beacon Hill, where the state's lawmakers meet, for Advocacy Day. This marked the first time local chapters of seven organizations had come together in a coordinated effort to inform legislators in face-to-face meetings about the critical need for more research.
Attending were representatives from the ALS Association, Parkinson's Action Network, National Multiple Sclerosis Society, American Stroke Association, American Parkinson's Disease Association, Alzheimer's Association, Epilepsy Foundation, and National Headache Foundation.
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For Massachusetts State Sen. Steven A. Tolman, Think Neurology Now hit close to home. In a speech, he talked about his family's own struggles as physicians try to zero in on the neurological disorders experienced by his own two children. He stressed that he was not speaking just for his own family, but of his concern for all his constituents.
“Look at the money that the government puts into heart disease, look at the money we put into cancer, and then look at neurology. It doesn't compare. This was a good event because the many state legislators who came are now better informed about why we need this research,” he said.
The Beacon Hill event enabled advocacy groups to meet with lawmakers, and also forge bonds with each other, said Bill Murphy, state government coordinator for the Epilepsy Association of Massachusetts and Rhode Island and state government relations consultant for the National Epilepsy Association.
“This was an opportunity to show lawmakers how neurological problems impact not only the patients, but their families as well. It also gave advocacy groups the opportunity to network with each other,” Murphy said.
AAN Foundation Executive Director Martin Schafer was pleased with the Boston campagn. “We surveyed the patients and caregivers who attended. They told us they thought they got excellent information, and that the presenters were marvelous. So we will take this information to our board to create a task force to move forward, and designate more dates and sites for the events,” he said.
The next AAN event in the public awareness campaign will be the first-ever Neurology Expo, which will be held on Saturday, Oct. 22 in Atlanta, Ga. Look for more details in the next issue of this magazine.
The campaign, along with the publication of this magazine, Neurology Now, created specifically for patients and caregivers, is part of the AAN's goal to perform a wider, vital public service. It is also designed to explain the critical role of the neurologist in ensuring the best possible care and quality of life for patients.
There are plenty of opportunities for you to get involved with the activities of the Foundation and the AAN. For more information about the Think Neurology Now campaign, visit www.thinkneurologynow.org. To learn more about the AAN Foundation, visit www.neurofoundation.org or call (866) 770-7570.
To Learn More
Information from the advocacy groups who attended Think Neurology Now can be obtained from:
ALS Association, www.als.org
Alzheimer's Association, www.alz.org
American Parkinson's Disease Association, www.apdaparkinson.org
Parkinson's Action Network, www.parkinsonaction.org
National Multiple Sclerosis Society, www.nationalmssociety.org
American Stroke Association, www.strokeassociation.org
Epilepsy Foundation www.epilepsyfoundation.org
National Headache Foundation www.headaches.org