Friday, Apr 18, 2014
Health

Alzheimer’s disease fight needs many voices


Published:   |   Updated: April 25, 2013 at 03:02 PM

Commonsense CaregivingRecently, I had the extreme pleasure of conducting a phone interview with George Vradenburg, founder of “USAgainstAlzheimer’s.” This incredible organization is a community individuals who have been touched by Alzheimer’s Disease, and are united by frustration at a broken status quo. They are determined to end Alzheimer’s by 2025.

Vradenburg has been a faithful trailblazer in organizing and inspiring people across the country to join in the fight. He believes the “US” represents the assemblage of researchers, family’s members, caregivers, advocates, hundreds and public officials who are willing to fight together to discover a cure for this heartbreaking illness. To put it mildly, he builds awareness on a grand scale.

Often, I feel as though my work as an Alzheimer’s advocate, speaker, writer, etc have been going on for a life time, but this man has been at it for decades. Along with his wife, Trish, whose mother tragically lost her battle against the disease back in 1992, they have worked hard to raise millions of dollars for funding.

Vradenburg is one of 12 non-governmental members of the Advisory Council on Alzheimer’s Research. He has built a strong relationship with United States Congressional Members, leading researchers and major health organizations. In addition, he has played a principal role in creating the “National Alzheimer’s Project Act (NAPA),” also serving on its council.

Partnering with the Alzheimer’s Foundation of America, USAgainstAlzheimer’s has recruited many associations, building a growing coalition of 57 organizations known as “Leaders Engaged on Alzheimer’s Disease (LEAD).” Collaboratively, they direct the focus of the Nation’s strategic attention on Alzheimer’s and other dementia related disorders.

To say that I was impressed with the man would be a major understatement. Everything he has accomplished is phenomenal, but the truth of the matter is we need an army of men and women like him. We need you!

Throughout our conversation, something that really hit home with me was this: the vast majority of the general public feels that there’s no need to contact their local politicians as their single voice just won’t make a difference! Some people believe that it takes thousands of phone calls and letters, when in fact, it may only take 15-20 to garner their attention and open their eyes. Remaining silent is what does the real damage. If every support group in existence would encourage at least half of their members to write a letter to their congress or senate regarding the lack of funding for their loved ones, or the urgent need of continuous research, imagine the reaction!

Vradenburg told me a great way of finding out what is currently happening in our political world with this disease is by going to USaAgainstAlzheimers.org and sign up as an activist. You will be notified of any breaking news and of any upcoming events in your area.

There’s no question that we all must pull together on this. This disease is just too monstrous to sit back and only let a minority attack it. We need to unite as a majority!

We also discussed the incorrect and unrealistic low numbers that keep appearing concerning the percentage of people diagnosed with Early-Onset Alzheimer’s Disease. Just the other Sunday I heard two doctors conversing on a national morning news show. They stated that “the percentage that gets the disease before the age of 65 is about 5 percent.” All I have to say is, they must have their heads buried in the sand! The numbers are so much higher! As we discussed on the phone, we do not have a current way to get a correct sum of how actually big numbers factually are. It’s frightening to think of how enormous they indeed may be.

The biggest problem I have with this is that some people, many of the being politicians, only pay attention to numbers.

However, what we need now are numbers in voices! Don’t be afraid to speak out and do it every single chance you get. I believe we can beat this disease by 2025. We just have to work together.


Gary Joseph LeBlanc was the primary caregiver of his father for a decade after he was diagnosed with Alzheimer’s disease. He can be reached at us41books@bellsouth.net. His newly released book, “Managing Alzheimer’s and Dementia Behaviors”, “While I Still Can” and the expanded edition of, “Staying Afloat in a Sea of Forgetfulness,” can be found at commonsensecaregiving.com.

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