Thank you all for the opportunity to speak with you this morning, I’m so pleased to be here.
Hope is a feeling of expectation. Faith for a certain thing to happen. We are here this morning to put hope into love action.
I want to tell you a little about what I’ve been doing to put my hope and faith into love action.
When I was diagnosed with younger-onset Alzheimer’s 3 years ago at the age of 51 naturally I and my family were devastated by the news. But it was and continues to be my responsibility, as long as possible, to lead and show my family that serving others from a place of love is how we manifest hope.
I spent almost a year and a half being misdiagnosed with a variety of neurological conditions before my Dr. at Columbia Medical Center of Neurology said it looks like Alzheimer’s. None of the other many specialists I saw wanted to go down a diagnosis path of Alzheimer’s because of my age. That narrative needs to change and with the Alzheimer’s Association advocating so strongly at the federal level for the BOLD Infrastructure for Alzheimer’s Act it will. I hope you learn more about the BOLD Act, it’s important.
With Alzheimer’s you can be faced with same negative internal and external forces of stigma. The internal forces say you have a terminal disease, recoil and isolate. The external forces say he/she is a shell of their former self and your friends and relatives may withdraw and abandon you.
This stima is largely due to decades, and centuries of misunderstanding and mis-information about Alzheimer’s and related neurodegenerative diseases. But the narrative is changing thanks to the wonderful people at the Alzheimer’s Association for inviting those of us living with the disease to the table and allowing us to speak directly with you, they knows how important it is for you to hear our voices.
I’m no longer working and can no longer drive. But I live a very fruitful life and have found great purpose in serving the community of people living with Alzheimer’s and their families. Volunteering with the Alzheimer’s Association as an Early Stage Ambasador is one of the most rewarding opportunities I’ve ever had.
Like today, I speak at many events. I write web articles for my website and others, engage in social media, advocate at the state and federal level, participate in print, radio and television interviews. My family and I will be featured in PBS production next year and a TV commercial this fall for Alzheimer’s awareness.
Hope becomes real with the Alzheimer’s Association and your support that helps to continue to change the trajectory for awareness, advocacy, education, support and research.
Research will translate into a cure and clinical trials are the means by which we insure the efficacy of drug. As soon as I was diagnosed, within days, my wife and I sought out available trials in my area. One of the tools we used was the Alzheimer’s Association TrialMatch website which provides information on some 200+ pharmacological and non-pharmacological studies.
For more than two years now I have been participating in the Biogen’s Aducanumab clinical trial. The first 20 months were what we refer to as the placebo controlled, or double blind study. For the last 5 months I’ve been in the open label which means we know I’m receiving the medication. Tomorrow I go for my next infusion.
I enrolled in my clinical trial because this is part of my hope plan. My plan is to do all I can save my children’s lives if Alzheimer’s is in their future, my grandchildren’s lives, and possibly your lives and your family’s lives. It’s said the the first survivor of Alzheimer’s will be one that is in a clinical trial now. That should give us all hope.
You are here today because, for one reason or another, you have some skin in the game. You got up early on a Wednesday morning to be here before work or before you start your day because you feel it’s important to be here. May I be bold and say that you too have hope.
So, let us all put our hope into love action with our awareness, our advocacy and our financial support for the Alzheimer’s Association.
Thank you for you time this morning and may you be blessed.
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