As a caregiver are you frustrated by the bleakness of treatment possibilities for Alzheimer’s disease? Perhaps you have a close family member who has been affected by Alzheimer’s and share my fear of developing the disease and not being able to do anything about it.
Have you wanted to take a stand personally in the fight to conquer this horrible disease?
I am writing today to talk about a window of opportunity for us to make a difference – by joining the Alzheimer’s Prevention Registry.
Spearheaded by the Banner Alzheimer’s Institute located in Phoenix, Arizona, I learned through a recent webinar about the Alzheimer’s Prevention Registry. This webinar was moderated by Dr. Jessica Langbaum, a principal scientist at Banner Alzheimer’s Institute and Associate Director for the Alzheimer’s Prevention Initiative.
The Registry is an easy way to get involved in the fight against Alzheimer’s. It is an online community of people who are willing and ready to take part in prevention research and prove that there is power in numbers.
Joining the Registry is very simple and easy. You may click the link below or visit their website – http://www.EndAlzNow.org and enter your email address. After you enter your email address, you will be presented with a few questions to better match people to research studies and information.
After you join the Registry, that information is stored in a secure database. You will receive email communication on a regular basis to provide you with information about the Registry, its mission, ways you can help, and what the Registry is helping to achieve.
As studies become available in your community or area of the US, you will receive separate email notifications about those research opportunities. Again, joining the Registry merely opens up the door for communication about research that’s going on. It does not require or obligate anyone to participate in a research study.
The Registry officially began in May of 2012. So far over 22,000 people have joined to date. People have joined to honor their family members – their husbands or mothers or aunts or uncles. They have joined the Registry in the hope that they themselves or their children do not have to be affected by this disease.
The goal is to have 100,000 people join the Registry before the end of 2013. Research studies have to screen many times the number of people than they actually need to fill a study. So 100,000 people are really needed to help fight this disease and find a cure.
The Registry is closely associated with the National Alzheimer’s Association Trial Match Program. Whereas the Trial Match program is phone based and may focus on treating people who already have Alzheimer’s disease, the Alzheimer’s Prevention Registry is web based and aimed primarily at matching people who are still cognitively healthy and going about their daily life with prevention focused studies. Those prevention studies may be healthy lifestyle interventions involving diet or exercise or observational studies where you answer some questions with a research team.
The toll of Alzheimer’s disease is reaching epidemic proportions. Right now over 5.2 million Americans are currently affected by the disease. Even more startling is that someone new receives the devastating diagnosis of Alzheimer’s every 68 seconds. It is the only Top Ten cause of death that cannot be currently prevented, treated, or cured. The number of people affected by the disease is expected to triple to 13.8 million in the United States by the year 2050.
The cost of Alzheimer’s disease is projected to increase from $203 billion today to $1.2 trillion by 2050. Virtually every healthcare dollar that Medicare and Medicaid spend by then could be related to Alzheimer’s without anything to spare for other serious illnesses.
Every person who joins the Registry brings us one step closer to that break-through discovery that may transform the treatment of Alzheimer’s and then allow us to truly defeat it for a far different future we can look forward to.
I have joined the Registry and urge you to do the same by a click on the link below.