Burke felt an unexpected push to get active in advocacy when she met some other Alzheimer's patients at a meeting of the Alzheimer's Association. Many of
them, she says, talked about their coping methods, which often involved "photography, pottery, or volunteering at the SPCA." These weren't exactly the
kinds of volunteer opportunities Burke was in the market for. At the meeting, she says, "I got angry. I said, 'This is ridiculous.' I told them that we
needed to be militant; we needed to follow the path taken by patients with HIV/AIDS. I had previously worked on HIV as a researcher. I had watched people
in ACT-UP requiring to be heard. I had seen how changes had been forced at the FDA. We too could force change if we were being forceful, visible and
demanding. 'This is what we need to do,' I said."
Now, working alongside the Alzheimer's Association, Burke has been a prominent advocate, meeting with legislators about funding and policy issues. "It is
much more effective, powerful and poignant message when advocacy teams include a patient," she says.
Burke hopes that the stigma associated with Alzheimer's disease and other early onset dementias will continue to dissolve over time. "It would be good to
overcome this stigma, particularly for younger-onset individuals. We educate the public about handling physical disabilities but not so well for people
with mental disabilities. We can walk fast, but we think slow. People should know more about the nature of the mental disability. Also, we need to educate
the public that this is not just a disease of the elderly. Younger people too can be cut off in their prime."
She urges more people to get involved with clinical trials, because this, she says, is the key to a cure. Her own research depended on clinical trials, and
so will drugs of the future. "My knowledge made me aggressively interested in participating in the clinical trial [for bapineuzumab]. I knew that the
treatment has the potential to be of value to me. More importantly, I know that it is essential to run these clinical trials because finding a cure depends
on finding an effective drug. My research background made me passionate about getting people involved in trials. This in turn has given me a sense of
purpose that has helped me cope with the disease and my career loss."
As for the support of her husband, it turns out Burke had nothing to worry about. "In the beginning," she says, "I was afraid that my husband might leave
me. He had not signed up for this. My husband has turned out to be a good man. I didn't have to worry. And talking to him and telling him my answers to
these questions has brought us closer. It has made me share things that I had not before. I'm very glad I did."