Tag advocacy volunteer

On a Personal Note… (Lou Bordisso)

Two years ago, at the age of 56, my neurologist informed me that I had been diagnosed with Younger-onset Alzheimer’s disease. My diagnosis was both a shock and a relief in that it finally put a name to and made sense out of all the problems I was having at work and managing my personal affairs.

Lou Bordisso

Lou Bordisso (left), living with Alzheimer’s, advocates in Washington, DC during the Advocacy Forum.

My experience living with this diagnosis is similar to many living with Alzheimer’s. When first diagnosed, my life took an unexpected turn. My future plans, hopes and dreams were altered by a few short words from my medical provider. Abruptly, my life, as I had known it, and the plans I had for it, changed.

Suddenly, I was navigating life insurance policies, trusts, wills, financial and long-term care planning, early retirement, social security disability, state disability insurance, medical directives, and compromised health – all at the same time! It has been overwhelming and confounding. Continue reading “On a Personal Note… (Lou Bordisso)” »

Alzheimer’s Changes the American Dream

Phuong Quach gets debriefed on the issues at the Advocacy Forum

Phuong Quach gets debriefed on the issues at the Advocacy Forum

When we first came to the United States as refugees from Vietnam, my father worked in a cereal factory with a starting wage of $3.75 per hour. Soon after, my mother also started work in a factory. With long hard hours of labor and determination, they were focused on the American Dream. Over the years, we really did become the poster family for the American Dream.

My parents were able to buy a home and a new minivan. All four of their children went to private liberal arts colleges, received advanced degrees and now have good careers. We made it and truly became Americans.

Continue reading “Alzheimer’s Changes the American Dream” »

California Advocacy Day: rainy and inspiring!

It was a soggy morning in Sacramento, but more than 200 dedicated Alzheimer’s Association volunteer advocates still showed up in good spirits to the 2012 Advocacy Day at the State Capitol. Among them: people with early stage Alzheimer’s, family caregivers, healthcare professionals and other Alzheimer’s champions.

Following a light breakfast and overview of the day, we were welcomed to the Capitol by Senator Tom Berryhill who thanked everyone for their work as volunteers.

“What you’re doing up here today is very important because education of these legislators in that building is so necessary.”

Training for the group continued with an overview of “legislator meeting Dos and Don’ts” by Assemblymember Holly Mitchell.

“We work for you and that can be a one sided relationship unless you make it otherwise and reach out to us on a regular basis,” she said. “That’s your responsibility as Californians. I have a job to do and you have a job to do to make us informed of issues that are important to you.

Continue reading “California Advocacy Day: rainy and inspiring!” »

Alz Profile: Paul Dugan, Walk Champion and Alzheimer’s Advocate

Paul and Susan were college sweethearts who had lived many adventures in their 38 years of marriage, including a stint with the Peace Corps in Afghanistan and teaching for two years in Norway, where their son James was born. The couple finally chose to settle in Reno, where they spent more than 20 years building their careers, family and community.

“My first recollection that something wasn’t right was when Susan wasn’t able to do simple addition or subtraction when balancing the checkbook,” says Paul. “Things got worse so we took her to a neurologist. He was the first person to bring up the possibility of Alzheimer’s.”

Continue reading “Alz Profile: Paul Dugan, Walk Champion and Alzheimer’s Advocate” »

Coming soon: Alzheimer’s listening session in San Francisco 8/10

You may have noticed the recent news about a new therapy for advanced melanoma. Good news. Listening to an interview with one of the scientists involved, he commented, “this is the payoff of decades of Federal investment in cancer research.” Indeed.

He made the case we make. The investment in cancer, heart disease and HIV/AIDS has been, and continues to be, a good one, making real differences in real people’s lives and bending the curve of cancer deaths downwards. We look now for a similar investment in Alzheimer’s disease before the Baby Boom generation is doomed to a huge wave of Alzheimer’s disease. Continue reading “Coming soon: Alzheimer’s listening session in San Francisco 8/10” »

Notes from the Alzheimer’s Association Advocacy Forum: Day 1, a celebration of success

From tonight's candlelight vigil

Greetings from the Alzheimer’s Association Advocacy Forum in Washington, D.C. The Forum got off to a rousing start this evening with a review of the past year’s advocacy success on the state and federal levels. Our National Board Chair started off with some words of motivation, reminding us that this Forum and our advocacy work year-round is an opportunity to be bipartisan in our ask for legislators to allocate just a few million dollars today to save billions tomorrow. Continue reading “Notes from the Alzheimer’s Association Advocacy Forum: Day 1, a celebration of success” »

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