Monday, June 22, 2015

Gene hunter by day, Aerosmith organist by night

By Jen Christensen, CNN
Watch "I'll Be Me," the story of 6-time Grammy Award winner Glen Campbell's farewell tour after his 2011 diagnosis with Alzheimer's disease, on CNN Sunday June 28 at 9 p.m. ET.
(CNN)When Aerosmith looked for an organist to play like a "drunken church lady," they could have taken their pick from hundreds of willing candidates.
But only one was also a Ph.D-wielding expert on how beta amyloid accumulates in the brain. That's who the band went with for their latest album.
Legendary Aerosmith lead guitarist Joe Perry met keyboard player and pioneering scientist Rudy Tanzi exactly where you'd expect two world famous people from different worlds to meet -- on a photo shoot for the men's fashion magazine GQ.
On the shoot, the two started chatting. Tanzi mentioned he played keyboard, so Perry invited him to jam with the band. The two hit it off so well that since then, the Kennedy Professor of Neuroscience at Harvard has been invited to play with Aerosmith on a number of special occasions. His initial direction, he recalled, was to play like a "drunken church lady."
"It's been such fun," Tanzi said.
But his true life's work -- or at least the job he is most famous for -- is what he does as director of the Genetics and Aging Research Unit in the MassGeneral Institute of Neurodegenerative Diseases at Massachusetts General Hospital.
    Tanzi is one of the world's leading authorities on Alzheimer's disease. Since the mid-1980s, he has been an unstoppable force trying to understand the genetics of the disease that plagues 5.2 million Americans.
    As in his musical life, Tanzi is known in the lab for his innovative improvisation and for using an unexpected kind of creative thinking. That's why he may be the only scientist in the world who credits early-morning bus rides and watching a cheesy '80s television show as part of his first big break.
    The chromosome 21 guy
    Long before Tanzi was named to the Harvard 100 Most Influential Alumni -- along with such notables as President Barack Obama and Microsoft co-founder and former CEO Bill Gates -- he was just some kid sitting on the back of a bus doing his homework.
    It was the early 1980s, and he was living in Providence, Rhode Island. He kept a grueling daily routine: He'd stay up late playing gigs with his rock band, then rise early to catch a bus to make an hour-plus journey to Boston to work in James Gusella's lab.
    Gusella pioneered the use of DNA sequence polymorphisms as genetic markers at his lab at Massachusetts General Hospital. That essentially means Gusella was one of the first scientist to figure out how to map the genes of a disease.
    "Jim Gusella and I were just kids in our 20s, trying to figure it all out," Tanzi said. "Back then, before genetics became a real industry, you had to jerry-rig everything. To take pictures of DNA, I brought in a Polaroid camera my father gave me for my 13th birthday and I'd put it on a ring stand and I took the red acetate we would use from the light show for my band and it put in the lens. I'd take some of the maps from the dermatology labs to light up the DNA. That was the humble beginning of the human genetics revolution."
    On his bus ride, Tanzi would start his complex calculations. He was trying to build a full map of a chromosome to understand the mechanics of Huntington's disease. "I wanted to get finished fast so I picked the smallest one to map, which is chromosome 21," he said.
    Tanzi says the bus had its regulars with their routines. "They'd be drinking their coffee and get on the bus and say, 'Hey Rudy, how's the map going?' And every day, I'd say, 'Gettin' there. We're gettin' there.' "
    There was no computer program to help back then. So Tanzi did all the tedious work by eye and by hand. "I would sit there with these huge family trees on my papers and I would track genetic markers and I would know who had the disease in the family and who didn't," Tanzi said.
    One night, when he was lying on the red shag carpet back in his Providence apartment, he took out those family trees.
    "I'll never forget I was watching 'Love Boat,' " Tanzi said. "And occasionally I'd look up to seeGopher running around the ship and then look down to write down all the information onto this family tree, then I'd look back up and Gopher was still running around the ship, and then I'd go back to my calculations.
    "After just a little while of doing this I thought to myself, 'My God, this is perfectly lining up. I think we may have found the Huntington's disease gene.' I'm not sure if Gopher ever stopped running around that ship, though."
    It turned out his calculations were right. His work earned Tanzi and his project director some renown.
    "I was just the hands on the project. It was Guesella's brain that made this happen, but it was so cool to actually do the work and to experience this kind of 'aha' moment for the first time," Tanzi said. "Plus, for a while I became known as the chromosome 21 guy, at least for a few years."
    Tanzi was hooked, and his knowledge of chromosome 21 would open more doors to his life's work.
    Stealing who you are
    "Back then there was so much optimism that we could find human genes that cause disease," Tanzi said. Working on chromosome 21 led him to study Down syndrome -- those with the condition have an extra copy of chromosome 21, along with an increased risk for Alzheimer's.
    "So I said, if I have a map for chromosome 21, maybe there's an Alzheimer's gene on this chromosome. So I decided to switch to Alzheimer's," Tanzi said. That was around 1983.
    "And from there I've never turned back."
    At the time, he said, he knew no one with Alzheimer's. "Sometimes in the lab you do these things like you are solving a puzzle and you don't experience the human side," Tanzi said. But only a short time into the work, he got some terrible news.
    His beloved paternal grandmother was becoming increasingly confused. It was soon suspected she had Alzheimer's.
    "It's amazing how as a scientist you become so much more inspired to solve that disease and to work harder and faster by seeing that disease eye to eye, especially in a loved one," Tanzi said. His grandmother quickly went from being friendly and doting to someone who sat stonefaced, unable to recognize her family.
    He says often he will invite families who have relatives struggling with the disease to talk with his students at Harvard.
    "What you see is that this disease is really the worst thing you can imagine," Tanzi said. "Because you spend your whole life -- decades and decades -- accumulating memories and association, and you develop a personality of who you are based on your experience and memories. And this disease comes in and rips all that right out. So it literally steals who you are from you. There is no other disease that does that. There is nothing worse."
    Spurred on by these examples, he worked with urgency. By 1986, all those long hours in the lab paid off.
    "I remember that day," Tanzi said. "We were looking through this one gene we found, and we said, 'Wow, this is matching up pretty well. The protein this gene makes looks exactly like the amyloid that we see in Alzheimer's.' " Amyloid is an abnormal protein that starts to build up in the brain in Alzheimer's cases.
    "When we saw this gene, I remember thinking, 'For the first time since Dr. (Alois) Alzheimerdescribed amyloid in 1906, I think we have finally learned something new about the disease. We now have a gene.' "
    But his celebration was short-lived, he said. "Little did we know that there were three other groups who'd found the gene over the summer of 1986 and we all published at the same time inFebruary of 1987, but it was still a good moment for us. It meant finally now we have a target for drug discovery."
    How to take 'shots on goal'
    Since then Tanzi and his lab have found several other genes related to Alzheimer's, and they are starting to get a clearer picture of how the disease works.
    His lab is a creative place. He tells his students when they walk in the door that they've got to be willing to trust their intuition and to take whatever their pet theory is and try to "bash your hypothesis and see what holds up in the end."
    Even its building is unique -- the lab is tucked in an old brick shipping building. From his window, Tanzi can watch the tourists go by in duck boats, taking pictures as they travel along the Mystic River. His office wall is covered with only a small representation of his many awards, and it is dominated by a beautiful black-and-white photo of his then-baby daughter asleep across his arms while he plays the piano.
    From this office, he strategizes about the next steps in his race to find a cure. He keeps a big red button on his desk that says "no" when pushed. As a joke, he brings it out when his grad students come in to ask for expensive equipment.
    From here, he also makes calls and answers e-mails about his many other projects. There's the New York Times bestseller, "Superbrain," that he co-wrote with new-age doctor Deepak Chopraand the successful PBS show that went with it. There are the small pharmaceutical companies he's co-founded to explore possible Alzheimer's cures and treatments. There is the work he does as chair of the Cure Alzheimer's Fund, which aims to fund new studies concerning the disease. And there is the political consulting he has done with the White House, which has set agoal of curing the disease by 2025.
    Alzheimer's has generated a lot of bad news in the past few years. A number of drug trials have failed recently. The handful of drugs that do exist can slow -- but not stop -- some early symptoms, and even then, only work in less than half the patients. Tanzi, though, believes that with more funding, a cure is possible.
    "In general, drug discovery usually takes two or three waves to get there," Tanzi said. "The first wave already failed. The second wave largely failed, but there is a bit of hope in there. Generally, though, with this third wave that's coming up in the next few years, I think we've learned from our mistakes and I remain optimistic.
    "The good news is, largely due to genetics, we know what we need to do. And we have the information that says 'Here's how we take the shots on goal.' "

    Sunday, June 21, 2015

    An Alzheimer's Poem

    Do not ask me to remember.
    Don't try to make me understand.
    Let me rest and know you're with me.
    Kiss my cheek and hold my hand.

    I'm confused beyond your concept.

    I am sad and sick and lost.
    All I know is that I need you.
    To be with me at all cost.

    Do not loose your patience with me.

    Do not scold or curse or cry.
    I can't help the way I am acting.
    Can't be different 'though I try.

    Just remember I need you,

    That the best of me is gone.
    Please don't fail to stand beside me,
    Love me 'till my life is done.

    Wednesday, June 10, 2015

    Riding With a Purpose on The Longest Day

    Just a reminder, We are all touched by ALZHEIMER'S in different ways. What a great story and a great way to honor a person on the longest day. Mark your CALENDER'S June 21, 2015!

    BY 
    In recognition of Father’s Day we would like to thank Peter Daly for his efforts to honor his father’s memory through The Longest Day. Peter is cycling from sunrise to sunset to represent the endurance of caregivers and those that face Alzheimer’s….
    Over the past 25 years I have bicycled almost every Sunday in the Santa Cruz Mountains on the San Francisco Peninsula with a group that ranges from 2 to 75 people. The ride is a social ride that can be 18 miles or 70 miles long, depending on how aggressive one wants to be, but the camaraderie of the group makes any length easy. Riders can be weekend warriors or professional riders, Moms and Dads or teenagers, fast or slow, but all enjoy the beautiful scenery and the great conversations.
    On June 21, The Longest Day, I’m riding with more of a purpose: I’m riding to help fight Alzheimer’s and to make all the riders aware of the the true costs of the disease. A few of the riders have been through the ordeal of caring for a loved one as Alzheimer’s takes over their lives. I became involved with the fight against Alzheimer’s Disease when my father (a loving husband, father and successful executive) was diagnosed in early 2000. Our family watched as he devolved from a brilliant conversationalist to a quiet person much more likely to sit in a corner than the outgoing story teller we knew and loved.
    So, on Sunday, June 21 a number of us will do what we do every Sunday, but this time with more of a purpose: to help educate people in the fight to end Alzheimer’s.
    Peter Daly 
    Over The Hill – Cycling Team

    Friday, June 5, 2015

    Going Purple for Alzheimer's

    By: Brooke M. Westlake-Kelley
    Welcome to JUNE 2015. 
    The month of June is dedicated to wearing purple for Alzheimer's awareness. Last year I took part in the longest day ever June 21, 2014 for Alzheimer's and this year I will be at it again. 
    However with June being the month of purple for Alzheimer I thought I would share a little bit.  I have always loved the color purple. It was never on the top of my color chart favorites, but I liked it. Looking back to 2012, I found it ironic that the woman's suit I bought for my grandma Bev to be burred in was a dark purple. The casket I picked out for her was a lighter purple along with light colored purple roses that laid on top of her casket.  I had never put two and two together that purple was also the color dedicated to Alzheimer's and Alzheimer's awareness. It put a small smile on my face to know the meaning of the color had literally come full circle into my life and my grandma Bev when she passed away. Now I buy things in the color purple and think of her and the disease that we are trying so hard to find a cure for. My water bottle: purple, desk fan: purple, nail polish: purple. I do this all now consciously. Sometimes buying an item in the color of purple makes me sad, because it reminds me that my grandma is not here with me, other times buying an item in purple reminds me of all the other people that are living with or care taking for loved ones that have Alzheimer's.  Peace by peace I ask it to mend my heart and those like myself that have experience the loss of a Alzheimer's patient, care took for an Alzheimer's patient or have Alzheimer's themselves. I encourage you all to wear your purple this month. #ENDALZ #GOPURPLE #STILLBEVERLYJEAN #REMEMBERMYPHOTO