October 24th marked Maria Shriver's first ever March on Alzheimer's. In the wake of the release of The Shriver Report: A Woman's Nation Takes on Alzheimer's, men and women from around the country are raising awareness of and funds for Alzheimer's by marching together in Long Beach, California.
Among them is March Co-Chair Soleil Moon Frye. She joins the fight on Alzheimer's for personal reasons - her father has the disease. She talks with us here about how his diagnosis turned her into an activist.
You directed a documentary in 2006, Sonny Boy, looking at your relationship with your father, Virgil Frye, who has Alzheimer’s. What inspired you to create this documentary?
My dad and I had been on this journey in life together, we had our ups and downs, but he was still my father. As he got sick and we realized he had this insidious disease, I wanted to really get to know him better, so we decided to go cross-country. He had taken me to Iowa when I was a little girl – so we went from Los Angeles to Iowa and retraced his history. We drove through Alabama where he fought for civil rights, New Mexico where he helped make Easy Rider, New Orleans, Nashville and so many other colorful places along the way -- and it was all within 2 weeks. It was really intense and a life changing experience.
What was it like to shoot the journey?
I think for me the camera was my protection. It made me a little less fearful. The documentary was like my diary – I knew someday when I had kids I would want to share it with them. It was unbelievable.
Did the trip change your relationship with your father?
It brought us closer. Only one of us can carry on the memories. I wanted to get to know him before it was too late.
How did you get involved with the cause – fighting Alzheimer’s?
There were many times in my life that I felt alone in terms of dealing with this disease. It is an insidious disease that often times tears people a part. Through this journey I learned that millions of people are affected. And I found the Alzheimer’s Association – full of people who are so kind and with such open hearts.
From that time I have stayed involved – I became an Alzheimer’s Association Young Champion [an honor for bringing awareness to the disease]. I was on Capitol Hill in the spring with my kids, advocating to increase funds for Alzheimer’s research. And I’ve been using social media to raise awareness.
The face of Alzheimer’s is changing. It’s not just grandparents or our parents – our entire communities are affected. I was in DC with a 53-year-old gentleman with Alzheimer’s, who had an 8-year-old daughter. That is the new face of Alzheimer's.
When you look at the baby boomers – and the millions of people already affected – you realize that number will only grow. The disease is on the uprise. We don’t have the funding we need to deal with this – to detect it early and to make a difference. We must raise awareness and get the support to do research and to find a cure.
I’m so grateful for Maria Shriver’s March on Alzheimer’s and all the people who come forward – whether it is to march or to donate $5 or $10.
It is my hope that Alzheimer’s is not just a quiet disease. People have been afraid to talk about it – but they are not alone. It's time to have our voices heard and fight for the memories of those that can no longer remember.
For more on Alzheimer's and The Shriver Report: A Woman's Nation Takes on Alzheimer's, visit, www.shriverreport.com