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A picture worth 1000 words
When their 46-year-old mother, Carol, was diagnosed with early-onset Alzheimer's disease, sisters Melissa Washburn and Cambria Anderson experienced a period of shock, sadness and mourning. How could someone so young, vibrant and in the prime of her life fall victim to this devastating disease, they wondered. Then, taking a page from their mother's own book, they decided such thinking wasn't going to do anyone any good, and they set out to learn as much as they could about the disease, its treatments and the possibility of a cure.
"Everything we do we do out of respect for our mom," said Cambria, now a 31-year-old mother of two from Idaho Falls, Idaho. "Our mom was a powerhouse. She sought answers when she needed them and she didn't take no for an answer."
The sisters' quest for answers led them to contact Alzheimer researchers, as participating in research was important to both mother and daughters.
"I think her background as a nurse made her willing to do it, and she saw it as a way to contribute to the scientific and medical community," recalled Melissa, a 29-year-old stay-at-home mom from Orem, Utah. The scarcity of early-onset trials, however, was frustrating for all. "Here was our mom saying, 'Study me,' but she didn't qualify for anything because she was too young."
And so the sisters emailed personal pleas to some of the world's most renowned Alzheimer researchers. Much to their surprise and delight, several responded, and as a result they were able to meet with researchers at the University of Washington and enroll their mom in a research study.
Their belief that hope lies in continued research led the sisters to register for the 2006 Alzheimer's Association Public Policy Forum-even though they had no prior advocacy experience. They did, however, have a powerful story to share.
The realization that their mom's story might be an effective advocacy tool came to them through the process of assembling a scrapbook of her life. They entered the book into a scrapbooking contest and ended up winning the $10,000 grand prize.
"What really took us to the next level of wanting to share our story with other people was how touched the judges were by the book and my mom's life. They had no idea Alzheimer's could strike someone so young," Melissa said. "They said, 'you have such a fantastic story to share, you've got to share it with other people.'"
And so last June, Melissa, Cambria, and their father, Mark, used the prize money to fly to Washington for the Forum. There, they realized for the first time that they weren't unique and there are many more people in the same boat. The bonds forged with those other early-onset families and caregivers remain strong today.
"We speak on the phone weekly and e-mail constantly. We created a network of support for each other," Melissa said.
The sisters also remain in touch with many of the aides and legislators that they met during the Forum's lobbying session, something they credit to the lasting impact of their mom's early-onset story.
"A couple people said, 'I didn't even know this could happen.' And to me that just said, we have so much work to do if our own legislators don't know this can strike younger people," Melissa said. "Yes, it is exhausting, but there's so much to be motivated for. We know, for our mom, a cure is not possible, and even treatment isn't an option at this point. But they are for us, and for our kids. How could we not do it?"
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