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 Mayo Gets $1 Million to Study LBD 
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Joined: Fri Aug 11, 2006 1:46 pm
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Post Mayo Gets $1 Million to Study LBD
My friends at Mayo sent me this press release from today (3/22/11):


http://www.mayoclinic.org/news2011-jax/6218.html

Gift Will Allow Mayo Researchers to Further Explore Common, but Little Recognized, Cause of Dementia in the Elderly

Tuesday, March 22, 2011

JACKSONVILLE, Fla. — To help continue its internationally recognized work in Lewy body dementia, the Harry T. Mangurian, Jr., Foundation has awarded Mayo Clinic a $1 million gift, pledged over four years. Lewy body dementia, which combines aspects of both Alzheimer's and Parkinson's diseases, is the second most common form of dementia in the United States.

VIDEO ALERT: Additional audio and video resources, including excerpts from an interview with Drs. Dennis Dickson and Tanis Ferman, are available on the Mayo Clinic News Blog.

The funds will support studies designed to understand how Lewy body dementia develops, how to treat it more effectively, and how to diagnose it earlier.

"The generous donation by Mangurian Foundation will be used to advance our knowledge about one of the most common and least recognized disorders that causes dementia," says Dennis Dickson, M.D., a neuropathologist who is credited with being among the first to recognize the impact of Lewy body dementia in the elderly.

"This gift offers the exciting potential for improving the future care of patients with the disorder," says Dr. Dickson, who will oversee the projects the gift supports.

"We are pleased to provide this support to the Mayo Clinic, hoping that it not only enhances their research efforts into Lewy body and other dementias, but also inspires others to join in seeking effective treatments for this and similar diseases," says Stephen Mehallis, president of the Harry T. Mangurian, Jr., Foundation. "Our mission statement reflects our benefactor's wishes and determination to continue the fight against these diseases."

Harry T. Mangurian, Jr., was a businessman, an owner of the Boston Celtics basketball team, a Thoroughbred racehorse owner and breeder and a philanthropist.

Few medical centers have the experience with Lewy body dementia to perform studies in genetics, new drugs studies, and imaging, as Mayo Clinic proposes, Mehallis adds. Among their advances, Mayo researchers have identified features of the disease that helps physicians distinguish it, discovered distinct brain pathologies and located genes that cause or influence risk for Lewy body dementia, and have developed promising imaging techniques to aid in diagnosis.

The Mangurian Foundation gift will fund three projects that will involve scientists at Mayo Clinic campuses in Jacksonville, Fla., and in Rochester, Minn., according to Dr. Dickson.

The first study combines a clinical registry with genetics research, with the ultimate goal of identifying genes that cause or influence risk for Lewy body dementia. The second project will support laboratory research to refine a cellular model of the disorder and use it to test drug therapies. The third project, occurring in Rochester, is an imaging study that is designed to develop imaging techniques to help physicians diagnose Lewy body dementia and document its progression in patients.

Among the participating researchers are Tanis Ferman, Ph.D., in Jacksonville, and Bradley Boeve, M.D., in Rochester. They are developing methods to accurately diagnose Lewy body dementia in its earliest stages, using questionnaires and psychological tests.

Kejal Kantarci, M.D., in Rochester, will study Lewy body dementia patients using magnetic resonance imaging (MRI), a brain imaging technique, to "see" the differences between this form of dementia and Alzheimer's disease, and to understand how these changes can be recognized early.

In his neuropathology laboratory, Dr. Dickson will evaluate the brains of Lewy body dementia patients with the goals of improving the diagnostic capabilities of MRI and understanding what happens in the brain that makes this form of dementia appear different from Alzheimer's.

The Foundation will also support Shu-Hui Yen, Ph.D., in Jacksonville, who has developed a way to form Lewy bodies in cultured nerve cells. She is using this system to discover drugs that may one day be useful in treating Lewy body dementia.

Collectively, these studies have the potential to help researchers learn more about Lewy body dementia to improve our ability to diagnose the disease earlier, identify new treatment possibilities and even create individualized medicine and prevention opportunities, Dr. Dickson says.

About Mayo Clinic
Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. For more information, visit MayoClinic.com or MayoClinic.org/news.


Tue Mar 22, 2011 5:00 pm
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Post Re: Mayo Gets $1 Million to Study LBD
That's great news, Robin--thanks for posting it!

Julianne


Tue Mar 22, 2011 8:42 pm
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Post Re: Mayo Gets $1 Million to Study LBD
I agree. Wonderful news! :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 22, 2011 10:53 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Today (3/29/11), a nice three-minute TV news interview with Dr. Dickson was posted to the Jacksonville (Florida) news station's website:
http://www.news4jax.com/video/27355519/index.html

He talks about a clinical neuropsychological study and brain donation. He reviews the symptoms of LBD.

The $1 million gift wasn't mentioned but I assume that was the impetus for this interview.


Tue Mar 29, 2011 6:06 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Every little bit helps!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 29, 2011 7:05 pm
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Post Re: Mayo Gets $1 Million to Study LBD
I believe I will be participating in this study.

Supposed to find out more on Apr 4 at seminar at Mayo MN.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Apr 01, 2011 11:04 am
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Post Re: Mayo Gets $1 Million to Study LBD
Keep us posted! Mayo has lots of ongoing research on DLB so I'm not sure if this new infusion of cash is paying for something new. (Given that Dr. Dickson has been the most visible researcher on the $1 million donation, I assume his brain bank is getting lots of the money or perhaps he knows the donor.)

Mayo Rochester has wonderful researchers -- Dr. Brad Boeve, Dr. Ron Peterson, etc. You can't find better experts than at Mayo Rochester.


Fri Apr 01, 2011 12:42 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Mayo announced that on March 22. I was diagnosed on March 23 at Mayo MN, by Dr. Boeve.

He indicated that I would be in the new study that was just announced, to watch the 5 part video on youtube that had just been put out there….

One thing he said was the new DAT Scan that was just approved by the FDA would be included in the study and that I would be looking at getting that….I googled that….its a dopamine study….using a drug similar to cocaine to produce a visual similar to the PET scan that uses glucose to make a visual studying brain metabolism…really wild stuff….but, offering hope to people early on….like me….or better yet….earlier than me…maybe one day we can skip the caregiver or at least make it a lot easier on you…

I sure will share…one way or the other…hope I can help…I am in the fight…for the long haul...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Apr 01, 2011 1:18 pm
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Post Re: Mayo Gets $1 Million to Study LBD
BC, I surely do hope getting a good, early diagnosis and participating in a research study will enhance your quality of life with Lewy. Sounds like you are in the best of hands.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Apr 01, 2011 2:15 pm
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Post Re: Mayo Gets $1 Million to Study LBD
I'm excited for you, BC. I hope this turns out to be a magical experience for you!

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Apr 01, 2011 2:46 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Bayou Cajun,

It's probably a matter of semantics. The five-part videos have Dr. Dickson and Dr. Ferman talking about research that they've already done. Of course ongoing research and future research builds on top of that. The links to the five videos are posted here:
viewtopic.php?f=14&t=2863

Having the new SPECT scan *finally* FDA approved is great. DA = dopamine. T = transporter. These scans have been going on in Europe for several years already. There's a fair amount posted on the DAT scans in the LBD Research section of this Forum.

Robin


Fri Apr 01, 2011 3:40 pm
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Post Re: Mayo Gets $1 Million to Study LBD
robin,

my last boss, on the job, when ask by me to describe how I appeared to her…..I asked her to write it down for me….when I knew it was a matter of days to when I couldn't take it any more…

she responded, " your speech is like a lot of thoughts throw up in the air….left to fall in no certain order " (that was really hard to read at the time….but, helpful….cause now I know, why everyone is looking at me that way) I used to write very long…very convincing argumentative essays…now, I have to break up my thoughts…(like this…) so they are not overwhelming, and I can process them faster as individual thoughts…and hope they make sense to whoever is reading them...

I tried to say, I think that what I remember, most of the time….because, that is about the size of it…

he probably told me to google the grant press release…and by the way google the videos just released….they will be interesting, too…

I haven't read much going back on the forum here….yet…but, I will…I am overloaded with bits of info...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Apr 01, 2011 11:40 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Bayou Cajun,

The five videos were posted to youtube on March 21st. You can find them at these specific links on youtube:

LBD Background - Mayo Video, 9 minutes (this is called 1 of 5)
http://www.youtube.com/watch?v=enxJZ4bA90k
(It gets interesting after the two minute mark.)

LBD Treatment - Mayo Video, 6 minutes (this is called 2 of 5)
http://www.youtube.com/watch?v=PoscAHz_g9E
(Dr. Dickson discusses the role of pathological research.)

Research - Mayo Video, 13 minutes (this is called 3 of 5)
http://www.youtube.com/watch?v=1ROHHTjfXK8
(This is one of the most interesting.)

Support - Mayo Video, 3 minutes (this is called 4 of 5)
http://www.youtube.com/watch?v=X2ktWA8uiQY
(Dr. Ferman discusses caregiver support.)

Role of Autopsy - Mayo Video, 7 minutes (this is called 5 of 5)
http://www.youtube.com/watch?v=Gc0CklPfkU8
(This one discusses the value to families and to researchers of donating your brain, if you have an LBD diagnosis.)

Robin


Sat Apr 02, 2011 12:04 pm
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Post Re: Mayo Gets $1 Million to Study LBD
A caregiver in our local support group follows news about Dennis Dickson, MD, at Mayo Clinic, as he's the neuropathologist who studied her husband's brain upon donation to Mayo Jax. She sent me this wonderful Mayo Clinic article on Lewy body dementia and research going on at Mayo. It refers to the $1 million donation give to Mayo to study LBD.


http://www.mayoclinic.org/mcitems/mc230 ... 6-2502.pdf --> article starts on page 22

The Complexity of Discovery
Mayo Clinic Magazine
2011 Issue 2

An hour or even a day isn’t enough time to talk to Gordon Latz and Steve Mehallis of Ft. Lauderdale, Fla.

Former business associates of Harry T. Mangurian, Jr., Latz and Mehallis now direct Harry Mangurian’s foundation, but they can entertain for hours with stories about the old days with Harry, who passed away in 2008, and his wife, Dorothy (Dottie).

“Working for Harry was a revelation,” says Mehallis, who left an executive position at a large accounting firm to become the financial adviser for many of Mangurian’s business pursuits, including the Boston Celtics. Mangurian purchased the Celtics in 1979, just as the team was about to draft Larry Bird and to assemble one of the best rosters in the history of the NBA.

“The pecking order at big companies is incredible. But with Harry it was like you were family and he let you do your job. At the end of the day, though, he was the decision maker and he did have the Midas touch. The acquisition and development of the Celtics was a perfect example. His timing was always impeccable.”

Fortune favored him in his personal life, too, says Latz, who was Mangurian’s operations manager for nearly four decades. “Harry Mangurian’s wife, Dottie, made you feel like she was your best friend as soon as you met her. Everyone fell in love with her right away.”

There’s more than a hint of wistfulness when Latz and Mehallis talk about Dottie though. At the mention of her name, their eyes drop to the floor for a moment. Their words are a little measured, and a somber feeling enters the room.

Although Harry Mangurian passed away three years ago, at age 82, from leukemia, Dottie is still alive. Yet the Dottie that everyone remembers started disappearing more than 10 years ago due to a mysterious brain disorder that began subtly.

“I used to walk on the beach every weekend with Dottie,” Latz recalls. “Gradually, the distance decreased. Then she couldn’t walk anymore and the hallucinations started, so we’d go out on the patio to enjoy the sun. Now she sleeps about 22 hours a day and barely says a word. At first, the doctors told us she had Alzheimer’s disease and Parkinson’s disease. But then we learned it was something else; something called Lewy body dementia.”

‘Like Alzheimer’s and Parkinson’s, only worse’
Lewy body dementia in many ways resembles a combination of Alzheimer’s disease and Parkinson’s disease. It often impairs movement and memory. Plaques and other brain pathology consistent with Alzheimer’s and Parkinson’s are found at autopsy in patients with this disease. There are no treatments to slow the progress of Lewy body dementia: only symptomatic therapies that improve quality of life.

But it would be a mistake to say the disease is a combination of two other disorders, says Dennis Dickson, M.D., a neuropathologist at Mayo Clinic in Florida, who has studied Lewy body dementia for two decades. “We talk to family members of patients, and they say ‘It’s like Parkinson’s and Alzheimer’s, only worse,’” Dickson says. “The combination of disease processes seems to be more than additive; it’s synergistic. So patients seem to have greater impairment than we would expect given the amount of pathology we see at autopsy.”

That’s just one of the unpleasant surprises that go along with Lewy body dementia. Its constellation of symptoms confounds many physicians, who often mistake it for Parkinson’s, Alzheimer’s or even schizophrenia because patients often have hallucinations. At the same time, patients are especially sensitive to some of the treatments for those disorders, particularly anti-schizophrenia drugs, and the wrong treatment can exacerbate symptoms or even be deadly.

The disease isn’t a rarity in the dementia world either. More than 1 million Americans have the disease, and it’s common, at autopsy, to find some degree of Lewy body dementia pathology in patients who are diagnosed with Alzheimer’s disease. “In some Alzheimer’s disease populations, as many as 60 percent will have some degree of Lewy body dementia pathology,” Dickson says. “So the picture of all dementias is becoming more mixed. But, we are now realizing that Lewy body dementia is more common than we once thought.”

A sleeping giant
Given all the complexities and challenges of understanding Lewy body dementia, perhaps it’s surprising that researchers at Mayo Clinic hold such hope for improving the future treatment of the disease. And sleep — perhaps the most prominent aspect of Dottie Mangurian’s existence today — is one of the main reasons.

Mayo Clinic researchers are finding evidence suggesting that excessive daytime sleepiness is a potential indicator of early-stage Lewy body dementia. But their sleep research has gone even further, finding a link between an uncommon sleep disorder, called REM sleep behavior disorder (RBD) and Lewy body dementia.

The finding comes from two decades of research led by Bradley Boeve, M.D., a neurologist; Tanis Ferman, Ph.D., a neuropsychologist; Dr. Dickson and several other Mayo Clinic colleagues. Patients with RBD act out their dreams, often violently, and the Mayo team has discovered that patients with RBD have an increased risk of developing Lewy body dementia.

That discovery offers a potential road to early diagnosis, improved quality of life and, eventually, treatments that finally hit the disease’s root causes.

Why? Because RBD can occur years — even decades — before the first signs of Lewy body dementia.

“Early diagnosis is incredibly important,” says Boeve. “Quality-of-life treatments have the most benefit early on, and we’ve found we can make a tremendous difference if we can start treatment earlier. Plus, a comprehensive approach toward management, including treatment of all sleep disorders, provides the best opportunity for clinical improvement.”

Looking further down the road, Boeve says the RBD discovery and other possibilities for early diagnosis will help make treatments more effective. Earlier diagnosis means earlier treatment. “Once we have therapies that actually modify the disease, not just the symptoms, it makes sense that the impact of those therapies will be greatest when started as early as possible.”

Although the RBD connection is a fruitful avenue for ongoing research and early diagnosis, the Mayo Clinic researchers all agree that it’s just one lead in the mystery that is Lewy body dementia. The solution will come when the various leads from across the spectrum of research come together. “We need to establish a definitive ‘profile’ for Lewy body dementia,” Ferman says. “One that fully defines the cognitive, clinical and pathological features of the disease. With that, we’ll make early, accurate diagnosis possible and help identify new, more effective therapies.”

The Mangurian Foundation legacy at Mayo Clinic
Through their leadership of the Harry T. Mangurian, Jr., Foundation, Latz and Mehallis are helping Mayo Clinic identify Lewy body dementia’s signature, and generate new possibilities for treating the disease. The foundation recently made a gift to support research on multiple fronts.

In addition to genetics, pathology and cognitive studies, the foundation’s support is helping Kejal Kantarci, M.D., a rising star in the radiology field, to develop a comprehensive imaging test. Kantarci is combining three types of imaging techniques, each of which provides information on different Lewy body dementia pathologies, to help diagnose the disease and differentiate it from Alzheimer’s.

Another recipient of the foundation’s funds, ShuHui Yen, Ph.D., is refining a cellular model of the disease. It’s one of the only models of its kind in all medical research. Not only is this model useful for understanding the formation of Lewy bodies, which are twisted bits of a protein called alpha synuclein, it’s also one of the first tools scientists will use to identify new therapies for the disease.

The breadth of research highlights an important and even a unique aspect of Mayo Clinic’s Lewy body dementia research program. “Some places have good pathology programs for Lewy body dementia and others have good clinical research,” Dickson says. “Mayo has both and we have good genetics research, too. But we aren’t stopping with what we’ve got. We’re recruiting more young scientists as well.”

Harry Mangurian would have applauded that news. “He was always looking ahead, and he was a marketer at heart,” Mehallis says. “He believed we could beat Lewy body dementia if we could get more people involved and if we made more people aware of the disease.”


Fri Dec 23, 2011 3:51 pm
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Post Re: Mayo Gets $1 Million to Study LBD
Thank you for posting this, Robin. It is interesting and encouraging.

And thank you, too, for your role in supporting this research, by asisting in the contribution of brain tissue.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Dec 23, 2011 4:44 pm
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