Maddy Dychtwald: Thank you for joining me today, Trish. I appreciate your time. You are one of the cofounders of UsAgainstAlzheimers. What motivated you to create this organization?
Trish Vradenburg, cofounder, USAgainst Alzheimer's: There were really two reasons. The first is very personal. My mom died of Alzheimer's disease. She was a woman I admired and adored; she was larger than life. She was born with a cleft palate, which was fixed when she was just a child, but she still struggled with a very nasal quality to her voice. And even though this was the case, she decided to build her adult life around public speaking. She was president of the Multiple Sclerosis Society in New Jersey and the Garden State Ballet. She was unstoppable, except when it came to Alzheimer's.
MD: How old was she when she was diagnosed?
TV: She died at age 83. While she was alive, for years we went from doctor to doctor without getting a clear diagnosis. Finally the doctors said, "We think she has Alzheimer's," but we barely knew what that meant at the time, or what Alzheimer's really was.
I watched this lioness of a woman disappear into the throes of Alzheimer's. A woman who was always in control, couldn't control anything anymore because Alzheimer's always wins. So my mom influenced me to take action against Alzheimer's disease. She always said, "You've got to make your life stand for something. You can't go through this lifetime without making a difference."
After she died, I couldn't let go of her. At the time, I was writing for the television sitcom Designing Women, so I decided to apply my writing skills to a play about my mom.
The play, Saving Grace, had its debut at the Kennedy Center, then traveled off-Broadway and went global from there. Someone translated it into Portuguese and it is still playing in Brazil. Let me just say, I got my best reviews in Portuguese. Since it was published, it has been performed by numerous community theater troupes throughout the United States.
We're about to have a reading of the play in Los Angeles with Carol Burnett. I hope that helps get the word out about Alzheimer's. It will be a one-act reading followed by dinner to raise money to help fight this horrific disease.
MD: And what was the second reason you started USAgainstAlzheimer's?
TV: My husband, George, and I began our fight against the disease by working with the Alzheimer's Association. We started the National Gala in Washington, D.C. We ran that event for the Alzheimer's Association for eight or nine years and raised ten million dollars. We knew a lot of political people and were able to enlist their support. However, the Alzheimer's Association is a large organization, and we felt like we had little real control.
Our personal connections were with politicians, people who make decisions about where taxpayer dollars will ultimately go for research. Some of the research involved stem cells, and the Alzheimer's Association doesn't support that. We did not agree with that stance, so we realized it was time to strike out on our own. We began by talking to the politicians. Ironically, when we visited the politicians, they would systematically say, "You're the first person who's ever come in here to talk to me about Alzheimer's."
MD: That's amazing.
TV: We knew that there was this need, so we filled that void. I've told senators and congressional representatives that you can be a Democrat, Republican, Tea Party, or independent. Alzheimer's disease doesn't play favorites, so no matter what your party affiliation, you have to be concerned with this disease.
MD: Obviously you've been incredibly proactive, but what would you say to the average caregiver who's exhausted from caregiving and has little time but still wants to make a difference? What would you suggest to them?
TV: Those caregivers who think they have no power whatsoever have to recognize that they have more power than they can imagine.
My very first job as a speechwriter was with Senator Harrison Williams, so I know what it means when congressional representatives get a letter from a constituent. They understand that their job is to listen to their constituents.
MD: So they really pay attention to these things? It's really democracy in action?
TV: Yes. What each of us can do is send a letter. First, organize your contact list. If you send USAgainstAlzheimer's your contact list, we'll help you make this happen. We can send a lot of information to your friends, family, and colleagues about Alzheimer's disease. We can provide them with links to their congressional representative so they can contact them directly without it being difficult. You've got to be the voice of the people who can't speak.