Maureen McGuire’s father helped make a history with his participation in the landmark brain imaging study, called ADNI.  It was his way of fighting Alzheimer’s, and making a difference for future generations of his family.  As the study gets ready to expand, researchers in Rochester are looking for more volunteers.   Here’s Maureen’s story:
 
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On the day my father died, his body was brought to the University of Rochester for an autopsy of his brain.  It was his wish to help researchers unlock the mystery of Alzheimer’s. 
 
Anton Porsteinsson was my father’s doctor.  He also oversees the local arm of a groundbreaking study called the  Alzheimer’s Disease Neuroimaging Initiative — also known as ADNI. ADNI uses MRI’s, PET scans and even spinal taps, to track the progression of Alzheimer’s.  
 
“This is one of the great studies in medicine,” says Dr. Porsteinsson. “This is a study that will be referenced and talked about for the next 100 years.”
   
There are 60 ADNI sites in the U.S. and Canada.  For the past decade, researchers been following more than 1000 patients.  These volunteers include people whose memories are normal, those who have mild impairment, and those with Alzheimer’s. Every year, they submit to memory tests and brain imaging.  Researchers compare and contrast the groups to see what sets them apart.  The goal is to predict who’s at risk of developing Alzheimer’s, before they have any symptoms.  “It’s easier,” says Dr. Porsteinsson. “It’s easier to prevent damage than it is to repair damage, and that is where ADNI comes in as basically the core, the foundation that we build on.”
      
Cynthia Huling Hummel is one of 60 people in the local ADNI study.  She signed on in 2011, when she was suffering from mild memory impairment. She has since been diagnosed with early-stage Alzheimer’s.  “I was trying so hard to cover up for my memory losses,” she says.  “I wrote it down, I checked it off, but I couldn’t keep up with it.  It was exhausting.”
      
“You have to move from why me, to what’s next and so one of the things that has helped me is being in the ADNI study. The results from my brain scans, all the tests, will help researchers to fight this disease.”
       
In my father’s final months, he struggled with basic life skills and language.  But he never stopped telling us he loved us, and it turns out that was his main motivation for taking part in ADNI.  “He was amazing,” says Dr. Porsteinsson. “His thought was even if this is not going to make a difference for me, this will make a difference for other people that will follow, particularly my family. It was the one consistent thing he mentioned over the course of five years.”
       
Because of the ADNI study, doctors can now diagnose Alzheimer’s with more certainty. And they’re using ADNI data to search for a treatment to beat it.  About half of the participants in Rochester agree to a brain autopsy upon death.  My father was one of them. The results, together with his history of brain scans, will help tell the story of Alzheimer’s.  It was his hope that it end with a cure.
 
The ADNI study received more funding to continue its important work.  Right now, researchers at the University of Rochester are recruiting new volunteers.  If you’d like to learn more, call 585-760-6569. 
 
For more information on ADNI3, go to adni3.org