SPORTS LEGACY INSTITUTE NEEDS OUR HELP
SPORTS LEGACY INSTITUTE NEEDS OUR HELP
Fellow NFL Retirees and your wives,
This might be the most meaningful email I have ever sent to you....
I am taking off my hat as NFL retirees' advocate and DAF member in order to bring a very serious matter of universal significance to your attention. Hopefully you will agree with me and become a brain donor for research that is vital to future generations of children, elders, and football players.
Much as we already volunteer on our driver's licenses to be organ donors; a very serious, distinguished group of physicians, from Boston U, Harvard, to UCLA, are performing valuable research; research that will pay dividends much faster if former NFL players agree to donate our brains upon death.
I myself am a donor, it will be my way of giving back, making a valuable contribution to society, and helping future head injury victims.
Please open and see the attachment for details and a non-binding sign up form.
By signing the form today, you are showing that you support the cause, and support independent concussion research being conducted at a prestigious medical school. This is not a binding, non-retractable commitment. It in fact can be retracted any day of your life, or even after if your family doesn't agree with your choice. You can take your time to decide if you truly want to donate – however, by signing up today, you will drive media awareness to the concussion issue and you will help drive research dollars toward this most important issue for all athletes.
Most of you may be aware of Chris Nowinski and the Sports Legacy Institute (SLI). Chris played football at Harvard and, of all things, became a top pro wrestler. Unfortunately, like too many NFL players, Chris received concussions and the subsequent problems associated with post-concussion, which led to his formation of SLI, along with distinguished neurosurgeon Dr. Robert Cantu. SLI partnered with Boston University School of Medicine in September to found the Center for the Study of Traumatic Encephalopathy and take this brain research to a new level.
Those of you who have visited www.Dignityafterfootball.org will recognize their logo and link on our site--
click on this logo for full information----www.sportslegacy.org
or for the direct brain donation info--
I am on the Athlete Advisory Board (click here for info) , which is something I am extremely proud and honored to be a part of. Higher up the chain, on the real Board of Directors, is Dr. Eleanor Perfetto. You remember Dr. Perfetto as the wife of a NFL retiree on the 88 Plan who tried to attend the recent Baltimore meeting with Goodell and was turned away.
SLI is responsible already, among many other accomplishments, for the autopsies on the brains of several deceased NFL players. Their research is showing a link between our football concussions and early dementia/Alzheimer's.
Remember after Andre Waters tragic suicide, the study that showed that this 40-something man had the brain of an 80 year old Alzheimer's sufferer? That was SLI members heading the research. Justin Strzelczyk, John Grimsley, Chris Benoit are among those who have been studied post-mortem. There have been others who have volunteered their brains and have been studied upon passing, SLI will announce the names when appropriate. SLI is also currently studying the brains of more former NFL players whose families chose to donate.
This research will effect all of us and future generations. It is the only way to determine once and for all if there is a scientific link between our concussions and our much earlier than average age of onset for dementia and other related problems. These researchers can tell the difference between dementia brought on by natural Alzheimer’s causes and dementia brought on early by trauma (aka football) by the location of damaged parts of the brain viewed after death. This type of research is how a link was established between smoking and lung cancer.
But research is only as good as the number of volunteers to offer brains for the study, the number of "samples".
Yes, it may be uncomfortable to talk about--but so was simply being an organ donor when that first became a choice.
I hope your response is overwhelming, let's end this controversy and be part of this most honorable worthy cause.
It will take a true act of selflessness and a big heart on your part- but that's what being an NFL player or retiree is all about, isn't it?
Please act now.
As NFL retirees, we have already given all we can of our bodies and brains. while alive at least. Here is one chance to give something to the SPORT of football, (not to the league owners or union, but Pop Warner, high school, college, and future NFL players)
here is SLI's list of some who have already committed to be donors.
Who Wish to Donate
Ted Johnson, NFL
Isaiah Kacyvenski, NFL
Ben Lynch, NFL
Bernie Parrish, NFL
Ralph Wenzel, NFL
Frank Wycheck, NFL
Bruce Laird, NFL
Mel Owens, NFL
Brent Boyd, NFL
Noah Welch, NHL
Steve Heinze, NHL
Rob Van Dam, Pro wrestling
Lance Storm, Pro wrestling
Chris Nowinski, Pro wrestling
Cindy Parlow, Soccer
Paul Grant, NBA
Malcolm Huckaby, NBA
Termite Watkins, Boxing
Jenny Thompson, Swimming
ADD YOUR NAME TO THIS LIST!
This email is the first real public appeal for donors, although the project has received much favorable media publicity; including from Alan Schwartz of the New York Times.
Please consider becoming a donor, read the attachment and find out how to sign up.
Call or email me with any questions, or contact Megan at the Center directly (tell her I sent you!)
Center for the Study of Traumatic Encephalopathy
HBA, ADNI, LOAD & Biosample Studies
Alzheimer's Disease Center
Boston University School of Medicine
72 East Concord Street, Suite B7800
Boston, MA 02118
as always, please forward this to all NFL families that you know- current active or retired- the more the better
below are the official forms and details
(end of letter from brent boyd)
CONTACT Brain Donation Pledge Form
I, (name) __________________________, am interested in learning more about donating
my brain upon death to the brain bank of the Center for the Study of Traumatic
Encephalopathy (CSTE) at Boston University School of Medicine through the
CONTACT research study.
I understand that the mission of the CSTE is to conduct state-of-the-art research of
Chronic Traumatic Encephalopathy, including its neuropathology and pathogenesis, the
clinical presentation and course, the genetics and other risk factors for CTE, and ways of
preventing this cause of dementia.
I give permission to CSTE and the Sports Legacy Institute to publicize that I am
interested in joining this registry of living donors.
Phone number (day): _________________
Phone number (evening): ______________
Professional sports: ___________________
If you have any questions, please contact Megan Wulff:
Center for the Study of Traumatic Encephalopathy
Boston University School of Medicine
72 E. Concord Street, Suite B7800 Boston, MA 02118
Phone: 617-638-6143 ~ Email: email@example.com
Please FAX signed form to 617-414-1197
Sports Legacy Institute and Boston University Medical Center announce
Center for the Study of Traumatic Encephalopathy (CSTE)
Mission of CSTE:
The CSTE was created in September, 2008 as a collaborative venture between Boston University School of Medicine and Sports
Legacy Institute (SLI). The mission of the CSTE is to conduct state-of-the-art research of Chronic Traumatic Encephalopathy,
including its neuropathology and pathogenesis, the clinical presentation and course, the genetics and other risk factors for CTE, and
ways of preventing this cause of dementia.
What is the Sports Legacy Institute?
The non-profit Sports Legacy Institute was founded by Mr. Nowinski and Dr. Cantu, in order to advance the health and wellness of
athletes and the safety of sports and athletic endeavors. SLI promotes medical and scientific research, prevention and advocacy of
sports injury issues, and education. The organization was conceived after SLI and their colleagues discovered four cases of CTE in
professional athletes. At the time of their deaths, all four athletes, who were under 50 years of age, had remarkable early cell death
and excessive amounts of the protein, tau, throughout their brains, indicative of CTE.
What is Chronic Traumatic Encephalopathy (CTE)?
Chronic Traumatic Encephalopathy (CTE) is a progressive degenerative disease of the brain found in athletes (and others) with a
history of repetitive concussions. CTE has been known to affect boxers since the 1920s. However, recent reports have been
published of neuropathologically confirmed CTE in retired professional football players and wrestlers who have a history of head
trauma. This trauma, which includes multiple concussions, triggers progressive degeneration of the brain tissue, including the buildup
of an abnormal protein called tau (see photos below). These changes in the brain can begin months, years, or even decades after
the last concussion or end of active athletic involvement. The brain degeneration is associated with memory loss, confusion,
impaired judgment, paranoia, impulse control problems, aggression, depression, and, eventually, progressive dementia.
Left (top ): Whole brain section from a 65 year old
control subject showing no tau protein deposition
Left (bottom): Microscopic section from 65 year
old control subject also shows no tau protein
Middle top: Whole brain section from 45 year old
athlete showing abundant tau protein deposition in the
amygdala and adjacent temporal cortex.
Middle bottom: Microscopic section showing
numerous tau positive neurofibrillary tangles and
neurites in the amygdala
Right top: Whole brain section from a 73 year old
athlete with severe dementia showing very severe tau
protein deposition in the amygdala and thalamus
Right bottom: Microscopic section showing
extremely dense tau positive neurofibrillary tangles
and neurites in the amygdala
For additional information about the CSTE or about how to participate in current or future research studies, please
contact Megan Wulff at 617-638-6143 or firstname.lastname@example.org, or visit www.sportslegacy.org
CSTE Programs and Focus
• C.O.N.T.A.C.T. (Consent to Obtain Neural Tissue from Athletes with
CONTACT is a living brain donation program through which current and
retired college or professional athletes agree to donate their brains upon
death to the CSTE brain bank for neuopathological analysis. Subjects will
also complete a yearly interview with study staff during their lifetime
describing their athletic and concussion history, their educational and
occupational history, as well as medical history and current cognitive,
behavioral, and mood symptoms.
• CSTE Brain Bank
Family members of deceased athletes may also agree to donate their loved
one’s brain and spinal cord after their death to CSTE brain bank to be
examined neuropathologically for evidence of CTE or other disorders of
the central nervous system. The family member(s) will be interviewed for
a history of their loved one, including his or her athletic and concussion
history, educational and occupational history, medical history and history
of cognitive, behavioral, and mood symptoms.
• Pilot Clinical Study
In the next year, it is expected that approximately ten living current or
former athletes who wish to donate their brain upon death to the CSTE
brain bank will be enrolled in a more involved research study involving
neuropsychological assessment (memory and other cognitive tests), MRI
scans of the brain, and examination of cerebrospinal fluid. The Center
plans to begin recruitment for this study in early 2009.
Initial Support and Funding
As published in the New York Times on September 23, 2008, a dozen athletes, including six N.F.L. players and a former United
States women’s soccer player, have agreed to donate their brains after their deaths to the CSTE. Among the dozen living athletes,
most with a history of concussions, who have agreed to donate their brains for examination after their deaths, are the former N.F.L.
players Ted Johnson, Brent Boyd, Frank Wycheck, Isaiah Kacyvenski and Ben Lynch. Also participating are Noah Welch, who
played hockey for the Florida Panthers last year, and Cindy Parlow, a former member of the United States national soccer team, and
SLI founder Chris Nowinski, a former professional wrestler and Harvard football player. All of them will be examined periodically
so their concussion histories and any cognitive decline can be documented in detail.
The CSTE is grateful for financial and academic support from the BU School of Medicine, as well as the BU Departments of
Neurology, Pathology, and Neurosurgery, the Health and Disability Research Institute at the BU School of Public Health, and the
VA New England Geriatric Research, Education, and Clinical Center. In addition, Drs. McKee and Stern recently received a
$100,000 award to support CTE research from the National Institute on Aging as a supplement to the BU Alzheimer’s Disease
CSTE Medical Team
Robert Cantu, M.D., Clinical Professor
of Neurosurgery at BUSM; Chief of
Neurosurgery Service at Emerson
Hospital; and a world-renowned expert
Ann McKee, M.D., Associate Professor
of Neurology and Pathology at BUSM;
Director of the BU ADC Neuropathology
Core, which involves conducting
neuropathological analyses of brain tissue
and maintaining the ADC Brain Bank.
Robert A. Stern, Ph.D., Associate
Professor of Neurology at BUSM, Acting
Director of the BU ADC Clinical Core,
and Co-Director of the BU Alzheimer’s
Disease Clinical and Research Program
Chris Nowinski, Former Harvard
football player and professional wrestler
who retired at age 24 due to multiple
concussions; Co-Founder of Sports
Legacy Institute and author of the book,
Head Games: Football’s Concussion Crisis