Winter 2009 CURE Newsletter

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Permit NO. 436
cure Newsletter
WINTER ’09, vol 13
www.CUREepilepsy.org
Every Dollar Counts Every Seizure Matters: Donate Today!
in this issue
MESSAGE FROM THE Chair 2
Board news 3
spreading the word 4–5
Spread Hope
this Holiday Season
Please contact the CURE office.
Email: [email protected] or 800.765.7118
Research news 6–7,
10
Post-traumatic epilepsy 8–9
EVENT news 11–15
NIH Director Dr. Francis Collins; Lauren, Susan, and David Axelrod;
Dr. Frances Jensen; NIAID Director Dr. Anthony Fauci; NINDS Director Dr. Story Landis;
with host Connie Milstein at the Washington, D.C. “60 Minutes” viewing party
Story page 4–5
BOARD NEWS
Message from
the Chair
CURE
Honorary Board of
Advisors:
U.S. Senator Herb Kohl, Chair
Milwaukee, Wisconsin
Jim Abrahams
Santa Monica, California
Richard Jasculca
Chicago, Illinois
Martin D. Penry
Winston-Salem, North Carolina
Board of Directors:
Susan Axelrod, Chair
Chicago, Illinois
Research Review Board:
Barbara Kelly, Chair
Oak Brook, Illinois
Frances Jensen, MD and Thomas Sutula, MD, PhD for their
for epilepsy. Cover stories in PARADE magazine and
invaluable contributions to CURE while serving on the Sci-
Valerie Davis, MD, Facilitator
River Forest, Illinois
Newsweek; appearances on the “TODAY” show, “Morn-
entific Advisory Board (SAB). Drawing on their considerable
ing Joe,” “Andrea Mitchell,” and “Campbell Brown”;
expertise in both research and clinical practice, Drs. Jensen
Tracy Dixon-Salazar, PhD
San Diego, California
radio interviews. Twelve million viewers tuning into
and Sutula devoted boundless time, energy, and passion to
Katie Couric and “60 Minutes” for a special segment on
this mission and their dedication is sincerely appreciated.
Jill S. Fischer, PhD
Winnetka, Illinois
Stacey Pigott
Wilmette, Illinois
James Schneider, MD
Northbrook, Illinois
2010 Scientific
Advisory Board:
Jeanne H. Donalty, Secretary
Utica, New York
Robert Fisher, MD, PhD
Stanford School of Medicine
Thomas F. Hynes, Treasurer
Chicago, Illinois
Howard Goodkin, MD, PhD
University of Virginia
Medical Center
Gardiner Lapham
Washington, D.C.
Randolph Siegel
New York, New York
Investment Committee:
Thomas F. Hynes, Chair
Chicago, Illinois
Patrick Nash
Chicago, Illinois
Randolph Siegel
New York, New York
Jeffrey L. Noebels, MD, PhD
Baylor College of Medicine
Ivan Soltesz, PhD
University of California, Irvine
Karen S. Wilcox, PhD
University of Utah
epilepsy and CURE.
]
EPILEPSY HAS NEVER BEFORE RECEIVED
SO MUCH PUBLIC ATTENTION.
]
And we’ve also been hard at work behind the scenes.
Michelle Marciniak, MPH
Program Officer:
Danielle Davis
Paul Toback
Bannockburn, Illinoisois
CURE is pleased to announce that Howard Goodkin, MD,
PhD and Ivan Soltesz, PhD are joining the SAB this year.
KINDNESS
A Tribute to McKinsey and Company
Since 1998, CURE has had a profound impact on the
dialogue and focus of the epilepsy community. Beginning with the unprecedented NIH Conference, Curing
Epilepsy: A Focus on the Future held in 2000, CURE’s
presence has switched the emphasis of the research
community for the first time ever toward the discovery
of cures.
Our dedicated staff and Board of Directors, led by the
pro bono efforts of McKinsey & Co. have undergone a rigorous strategic planning process. We are publishing our
first annual State of Epilepsy Research Report, which will
In order to accelerate continued progress toward
Dr. Goodkin, Associate Professor of Neu-
this ambitious goal, CURE embarked on a major strate-
rology in the Division of Pediatric Neurol-
gic planning process this past year, under the generous
ogy at the University of Virginia in Char-
and expert guidance of McKinsey & Company, one of
lottesville, VA, focuses his research on
the most prestigious management consulting firms in
the underlying mechanisms of prolonged
the world.
seizures in children with epilepsy.
help guide us through an ambitious three-year plan and
beyond. This first report will provide a baseline, and we
The stellar McKinsey team, who dedicated them-
selves pro bono for twelve weeks, included experts in
will report back to you annually on progress made in
Dr. Soltesz, Professor and Chair of the
terms of private and public funding levels, number of
health care policy, medicine, non-profit management,
Department of Anatomy and Neurobiolo-
researchers in the field, extent of collaborative efforts,
and organizational change. This devoted team led the
gy at the University of California, Irvine,
publications, and with a little luck, some significant
CURE Board through an intensive strategic planning
studies alterations in brain cell commu-
breakthroughs!
process that has produced a new three-year operational
nications following seizures brought on
plan.
by fever and after brain injury.
This is our time. Scientists are primed and ready.
The energy in the epilepsy community is palpable, as
demonstrated by the “60 Minutes” Viewing Parties,
which took place around the country. Patients, loved
ones, and our good friends and supporters are filled with
hope, determination, and commitment. But we can’t do
Executive Director:
IN-KIND
It is with deep respect and gratitude that CURE acknowledges
2009 has been an amazing and unprecedented year
Barbara Kelly, Vice-Chair
Oak Brook, Illinois
LeeAnn Brigido
Lincoln, Rhode Island
Scientific Board Updates:
Appreciation and Welcome
this without a significant infusion of dollars.
We need your help now more than ever. Please
donate to our Every Dollar Counts campaign by the end
hensive first Report on the State of Epilepsy Research
(see pages 6–7). This report elucidates the dire need
“Drs. Goodkin and Soltesz will each bring
important insight and perspective to CURE’s
understanding of the research needed to
enhance our understanding of particularly
Friends for a Cure Research Award. Together, we can
devastating types of epilepsy is
From all of us at CURE, I send you very fond
wishes for a healthy and peaceful new year, along with
our deepest gratitude for your support.
for increased funds for epilepsy research, as well as
specific areas of concern in the field that require concentrated focus and re-direction.
Scientific Advisory Board. Their
of the year to help us raise $250,000 for our special
make real and meaningful progress toward a cure.
In addition, data and analyses gathered during this
process have resulted in the publication of a compre-
critical to moving the field forward.”
“The entire McKinsey team was phenomenal to
work with. Their dedication, passion, and expertise have
strengthened our resolve, and will help us pursue our
goals in a much more aggressive and focused manner,”
remarked CURE Chair Susan Axelrod. “On behalf of all
the patients and family members hungry for answers,
–Barbara Kelly, CURE Vice-Chair and
we simply can’t express our deep appreciation enough
Research Review Board Chair
for this generous contribution to our organization and
this mission.”
In particular, CURE would like to acknowledge
Shannon Gordon, Jess Huang, Celia Huber, Greg Lewis,
Thank you to Jasculca/Terman and Associates’ VisCom department, and
in particular Michael Karter and Kelsey Krzmarzick, for newsletter design
and production.
Bryan Logan, Jerry Long, and Julian Mack of McKinsey
Susan Axelrod
and Company.
Chicago, IL
Washington, D.C
Washington, D.C.
Katie Couric
Tackles Epilepsy
on “60 Minutes”
Advisor General Jim Jones, Rahm Emanuel, Sally Quinn, Andrea
Mitchell, Alan Greenspan, Bob Bennett, Greta Van Susteren,
John Coale, and George Stephanopolous. Some of the brightest
minds in medicine and public health also attended: Dr. Francis
Collins, NIH Director; Dr. Story Landis, Director of NINDS;
Dr. Anthony Fauci, Director of NIAID; Dr. Howard Koh,
Assistant Secretary for Health at HHS; and Brigadier General
Loree Sutton, from Walter Reed Hospital.
impact—spreading awareness to the many Americans who,
before the show, had no idea of the number and breadth of
people impacted, the lack of adequate funding for research, and
the devastation epilepsy can cause. They were great conversation
starters, offering a way for people with epilepsy and their families
to share their stories. “This gave us a natural forum in which to
talk about our own son’s struggles with epilepsy with our friends
and neighbors,” remarked Sherry Healey of Naperville, IL.
Across the nation, supporters
host viewing parties
Adding to the excitement and momentum, many other
viewing parties were held across the nation, celebrating the
occasion and using the opportunity to raise awareness among
family members, friends, coworkers, and neighbors. Hosts and
volunteers sent invitations, emails, and Facebook messages to
spread the word about the show and their viewing parties. They
held gatherings while on vacation and despite family illnesses.
Determined guests in Berkeley, CA took two trains and a bus
after the Bay Bridge cracked, closing off their main route to
the party.
“I had no idea” was a common refrain. Viewers were shocked
to find out that epilepsy is as common as breast cancer, and
takes as many lives. However, they were heartened to hear about
research efforts underway and the work of CURE, and motivated
to reach out and get involved.
C
apping off an unprecedented year of media coverage,
twelve million viewers tuned in October 25th to watch
Katie Couric’s “60 Minutes” feature on epilepsy and CURE
(www.cureepilepsy.org/activities/60_Minutes.asp). The
segment featured Susan, David, and Lauren Axelrod; former
CURE Scientific Advisory Board member, Frances Jensen, MD;
and Captain Pat Horan, who developed epilepsy after a brain
injury incurred in Iraq.
Over a hundred guests gathered at the Washington, D.C.
home of CURE friend Connie Milstein to watch the segment
with the Axelrod family. Many notable CURE supporters packed
the garden and sitting rooms, including Vice President and Dr.
Jill Biden, Ambassador Richard Holbrooke, National Security
Chicago, IL
Warren, MI
]
VIEWERS WERE SHOCKED TO FIND OUT THAT
EPILEPSY IS AS COMMON AS BREAST CANCER,
AND TAKES AS MANY LIVES.
]
From potlucks and pizza parties to cocktail, garden, and
“virtual parties,” each gathering made an impressive and crucial
Wilmette, IL
As one host, Wendy Flammia, of Miller Place, NY, commented, “We finally feel a part of something special—a place
where together we can make a difference, not only in our
daughter’s life, but in the lives of all families affected by this
debilitating disease.”
CURE extends a special note of appreciation to Kathy Dodd,
former Board member and parent, for her tireless efforts organizing the viewing parties, and would like to acknowledge all of
those who hosted viewing parties (sidebar) as well as all of those
who watched and who reached out to become involved.
Wyckoff, NJ
Thanks to viewing party hosts:
Lizzie Ambrose
Wyckoff, NJ
Carolyn and Steve Johnson
Warren, MI
Lena and Vera Bembery
Detroit, MI
Robin Kish
Placentia, CA
Angela Byrd, MD
Baton Rouge, LA
Connie Milstein
Washington, DC
Ellen Cherry
South Euclid, OH
Carrie and Pat Nichols
Wentzville, MO
Maria Coleman
Bisbee, AZ
Evelyn Nussenbaum and
Fred Vogelstein
Berkeley, CA
Sara Cote
Ludlow, MA
Tracy Dixon-Salazar and
Maureen O’Connor
San Diego, CA
Carol Stemmelen
North Fort Myers, FL
Kathy Dodd and Stacey Pigott
Wilmette, IL
Maureen Stemmelen
Verona, WI
Wendy Flammia
Key Largo, FL
John Thoe
Chicago, IL
Andrew Giangrave
Westport, CT
Sara Todd
Cedar Rapids, IA
Sherry and John Healey
Naperville, IL
Eric Weil, MD
Chicago, IL
Visit www.cureepilepsy.org/activities/60_Minutes.asp to watch
the “60 Minutes” segment
San Diego, CA
Armand Smith
Peoria, AZ
Ludlow, MA
RESEARCH NEWS
Epilepsy research is significantly under-funded
STATE of EPILEPSY
RESEARCH
Per patient research funding by disease
2008
USD millions
2,000-2,500
900-1,200
Alzheimer’s Parkinson’s
On a per patient basis, the government
620-760
500-590
Autism
Epilepsy
invests less in epilepsy than it does in
other major neurological disorders.
Includes research funding across pharmaceutical companies, government,
and private foundations
T
his year, CURE has taken on another unprecedented initiative to impact epilepsy research and awareness by publishing
its first annual State of Epilepsy Research Report, 2010.
The analyses conducted to prepare this report confirm the
challenges we face in advancing research in this critical area:
• e pilepsy research is significantly under-funded from all
sources (governmental, private funds, and pharmaceutical
industry support);
• over 3/4 of current research focuses on improving symptoms
rather than uncovering root causes and mechanisms of the
disease; and
• epilepsy researchers are declining in number and are
less collaborative than researchers for other neurological
disorders.
Based on these findings, CURE is embarking on an aggressive
three-year plan to accelerate progress in research aimed at discovery of a cure. Key elements of the strategy include a re-balancing
and intensification of research efforts that will enhance our
understanding of the underlying mechanisms of epilepsy, and
an insistence upon active collaboration between researchers.
The infusion of more funding for these efforts is, of course,
critical to this process. These efforts cannot be successful without
a significant investment, and you have the ability to help by
donating at www.CUREepilepsy.org, or by writing your
representatives in Congress to share your personal stories and
your commitment to ensuring that epilepsy research funding is
a priority.
“WE DON’T WANT ANOTHER FAMILY TO GO
THROUGH WHAT WE’VE GONE THROUGH.
EPILEPSY IS A PROBLEM THAT CAN BE SOLVED
—WE JUST NEED THE FINANCES TO DO IT.”
–Barry Donalty, father of Christopher,
who passed away from SUDEP
The challenges are daunting, but CURE is confident that this is
the time for the epilepsy community to make meaningful progress
toward defeating this disease. The time is now, and we must make
the most of it.
Research in underlying mechanisms is needed
20-25%
Controlling
seizures
Understanding
causes and
mechanisms
75-80%
Percent of total research funding
Alzheimer’s
SOURCE: Evaluate; Paraxel; Pharmaprojects; NIH website; Foundation Directory Online; Tufts
CSDD Impact Report, 2007; Multiple foundations’ websites; Clinicaltrials.gov, search of last five
years; SG Cowan report, Sept 2008; ILAE; CURE Scientific Advisors; Visone
Government
911
Autism
400
Epilepsy
480
Private
Private funding for epilepsy is 88% less
than the average private funding for the four
93
2,050
Parkinson’s
neurological disorders studied.
160
45
240
60
50
Epilepsy affects more people than autism and
Parkinson’s combined.
And epilepsy causes 2–3 times the number
3
of deaths annually.
Average
% below
average
(epilepsy)
960
138
26
50%
57%
88%
Greater scientific collaboration is required
Number of authors and links by disease
Epilepsy
Estimated epilepsy research allocation
Despite disproportionate focus on simply
controlling seizures, approximately 40% of
patients are not seizure free.
Per patient research funding
USD, 2008
Pharma
Parkinson’s
Number of authors
1,230
6,590
Number of links
Leading researchers consistently claim that lack
of collaboration among researchers is a major
obstacle in the search for a cure.
1,109
10,560
+60%
Epilepsy authors have 60% fewer “links,” or co-authorships, than authors in
Parkinson’s, indicating lower levels of collaboration
To read the full report, visit: www.cureepilepsy.org/stateofepilepsyresearch
SOURCE: Evaluate; Paraxel; Pharmaprojects; NIH website; Foundation Directory Online; Tufts CSDD Impact Report, 2007; Multiple foundations’ websites; Clinicaltrials.
gov, search of last five years; SG Cowan report, Sept 2008; ILAE; CURE Scientific Advisors; Visone
Post-Traumatic Epilepsy
CURE Announces 2010 Prevention of Epilepsy
After Traumatic Brain Injury Research Awards
A Partnership with the United States Army Medical Research and Materiel Command (USAMRMC)
Prevention of Post-Traumatic Epilepsy (PTE) by
Pharmacological Neurostimulation—A Preclinical
Proof-of-Principle Study in a Rat Model of PTE
Asla Pitkänen, PhD
University of Kuopio, Finland
The signature wound of the wars in Iraq and Afghanistan is traumatic brain injury. Epilepsy will be a long-term, serious consequence
for many of these wounded warriors, resulting in difficult-to-control
seizures, along with potential motor disability and cognitive decline. Traumatic brain injury also affects about 1.5 million American
civilians annually. Dr. Pitkänen will investigate two pharmacological
compounds that increase neuronal excitability as a way to assess if
they can modify the neurobiological processes that lead to post-traumatic epilepsy (PTE). The ultimate goal is to develop treatments that
could potentially prevent the development of PTE, as well as enhance
motor and cognitive recovery in an animal model of epilepsy.
Pathological Electrical Brain Activity in
Traumatic Brain Injury
Richard J. Staba, PhD
University of California, Los Angeles
Traumatic brain injury and its major, commonly resulting condition,
post-traumatic epilepsy (PTE), are associated with significant functional disability. Currently, there is no way to predict who will develop PTE after brain injury, and no effective treatments to prevent it.
Dr. Staba’s research uses direct brain recordings to characterize very
fast electrical events called pathologic high frequency oscillations
(pHFOs) that are believed to be responsible for the generation of epilepsy in the brain. His research will attempt to confirm that pHFOs
underlie PTE. The long-term goal is to utilize pHFOs as a biomarker
to screen new disease-modifying drugs in order to prevent PTE.
New Biometric Technology for “Just-In-Time” Delivery of
Anti-Convulsants Following Traumatic Brain Injury
Stefan M. Lee, PhD
University of Southern California
A significant and common consequence of traumatic brain injury is
a selective loss of inhibitory nerve cells around the site of impact,
resulting in focal seizures emanating from the areas of the brain that
have been injured. Dr. Lee’s research will focus on a completely new
approach for the treatment of focal epilepsy utilizing a smart-pump.
The smart-pump will release an anti-epileptic drug to the brain as soon
as epileptic activity is detected to stop the seizure before it can spread
to other parts of the brain. This technology represents the future of
selective and immediate drug delivery for seizures, with the potential
of minimizing adverse side effects of medications.
Focal Cooling as a Prophylactic Treatment for
Post-Traumatic Epilepsy
Raimondo D’Ambrosio, PhD
John Miller, MD, PhD
Jeffrey Ojemann, MD
University of Washington
Matthew Smyth, MD
Washington University
CAPTAIN PAT HORAN’S STORY
I met my husband Pat on a rugby pitch at Radford University in
1993. He was athletic, confident, and always willing to lend a
hand. When he graduated, he enlisted in the Army, out of love for
his country and a desire to remain active.
Pat deployed to Iraq with the Arrowhead brigade in June
2006. On July 7, 2007, Pat was on a night mission in a Baghdad
neighborhood. While getting supplies for his men, he was shot.
Steven Rothman, MD
Pat’s traumatic brain injury was grave, and at the field hospital,
University of Minnesota
the medical staff had no choice but to remove half of his skull to
Seizures resulting from head injury often emanate from the specific
portion of the brain that has been injured, resulting in what are called
partial seizures. This type of seizure is often especially resistant to
treatment and there is an urgent need for novel and more effective
treatments. This project will determine whether focal brain cooling—
cooling of the area of the brain responsible for the epilepsy—is an
effective option to terminate seizures in both animals and humans.
The planned experiments will define both the therapeutic window best
suited to control and potentially prevent the partial seizures induced
by head injury in an animal model, and the magnitude and extent of
surface cooling needed to achieve a similar objective in humans. If
successful, this work will provide the groundwork for the translation
of focal cortical cooling from “bench to bedside” as a treatment for
human epilepsy.
allow his brain to swell. Since that frightful day, Pat has worked
hard to regain his ability to do things we used to take for granted:
use his right arm, walk, talk, write, and read.
However, the biggest stumbling block has been the post-trau-
matic epilepsy. I’ve never been more frightened than when Pat
experienced his first seizure four months after his injury. I truly
thought he was dying.
Over the past two years, Pat has tried several medications,
but continues to suffer from seizures. Months of hard work in
speech therapy are erased by a seizure. They can wipe him out to
where he cannot fully participate in his normal therapy regiment
for weeks.
Prevention of Epilepsy After Brain Injury
David A. Prince, MD
Kevin Graber, MD
Stanford University School of Medicine
Because seizures after serious head injury often first occur weeks
or even years later, there is a significant window of opportunity in
which to intervene and potentially prevent the development of posttraumatic epilepsy (PTE). Building on past NIH- and CURE-funded
studies, Drs. Prince and Graber will use three approaches in a rodent
model to attempt to limit the excessive connections between nerve
cells and the loss of inhibitory control of brain activity that contribute to epilepsy after injury. They will: 1) use gabapentin to limit the
formation of new nerve connections in the brain; 2) use a substance
(brain-derived neuronal growth factor) that nourishes and supports
normal inhibitory nerve cells in order to protect them; and 3) manipulate a gene responsible for the development of excessive excitatory
connections between nerve cells.
]
“I’VE NEVER BEEN MORE FRIGHTENED THAN
WHEN PAT EXPERIENCED HIS FIRST SEIZURE
FOUR MONTHS AFTER HIS INJURY.”
]
I often wonder what Pat’s recovery would have been like with-
out post-traumatic seizures. With a brain injury, most of your
recovery occurs in the first two years. With seizures to contend
with, not to mention the drug haze, Pat has had to work extra
hard to make gains. Pat is now on two seizure medications and
53% of Vietnam War
veterans with
penetrating head injury
developed epilepsy.
has been seizure free for about six months. We hope that this
combination will do the trick—at this point, I fear our options are
running out.
-Patty, Pat’s wife
See Pat in the “60 Minutes” segment: www.cureepilepsy.org/activities/60_Minutes.asp
Research NEWS
EVENT NEWS
Epilepsy Targeted for
DoD Funding
CURE-sponsored Conference
Studies Seizure Prediction
2009 Christopher Donalty CURE
Benefit Draws Sell-Out Crowd
CURE is pleased to announce that epilepsy will once again be
Kansas City, MO—On June 4–7, the Fourth International Work-
Utica, NY—On September 12th, more than 700 guests gathered
a targeted area within the Peer Reviewed Medical Research
shop on Seizure Prediction was hosted by the Alliance for
for the fourth Christopher Donalty CURE Benefit. George Aney,
Program in the Congressionally Directed Medical Research Pro-
Epilepsy Research and co-sponsored by foundations, includ-
who has chaired each event, delivered the opening remarks,
gram in the Department of Defense in 2010. Established in
ing CURE; government agencies; industries; and university and
thanking guests for once again demonstrating their commitment
1999, the CDPRMRP funds research of scientific merit with
hospital partners.
to raising money for epilepsy research. The keynote speaker David
direct relevance to the health of the soldier, military family,
Axelrod—Senior Advisor to President Barack Obama and father
and American public. Many projects funded by the CDPRMRP
The conference brought together neuroscientists, epileptolo-
have begun to yield combat health support technologies and
gists, engineers, mathematicians, physicists, and keynote speak-
importance of building upon a strong sense of community, which
products in the areas of Combat Casualty Care. In the past,
ers to expose each other to approaches and tools that could
is key to the search for a cure. He, his wife and CURE Chair
these projects have included several that focus on epilepsy—in
translate into innovative ideas to advance epilepsy research and
Susan Axelrod, and CURE Board member Jeanne and Barry
particular, epilepsy resulting from head injury.
seizure prediction and prevention. In addition to providing an
Donalty also shared their empowering personal stories. The event
annual, structured forum for the exchange of ideas, dissemination
For more information on CDPRMRP, go to:
featured cocktails, dinner, and a silent auction. In addition,
of findings, and evaluation of metrics to gauge progress,
http://cdmrp.army.mil/prmrp/default.htm
members of the Proctor Raiders baseball team raffled off a hand-
the workshops also form the basis for development of future
made quilt, designed and created by Maria DaBica Dardano.
collaborative projects.
Christopher, a 1998 graduate and standout pitcher of Proc-
CURE to Co-Sponsor Cuttingedge Research Conference
Waterville, ME—Thanks to a generous donation from CURE365,
by NIH.
Photo by: Tricia Scott and Brett Sahler
tor High School, died in 2002 of Sudden Unexplained Death
Investigators, industry representatives, and students from
in Epilepsy (SUDEP). Proceeds from the benefit will support
over seventeen countries were represented. Eleven investigators,
including CURE Research Review Board member Tracy Dixon-
Photo by: Tricia Scott and Brett Sahler
Salazar, PhD, were nominated and received fellowships funded
CURE is co-sponsoring the third groundbreaking Gordon
of Lauren, who has had epilepsy for 28 years—talked about the
the Christopher Donalty and Kyle Coggins Memorial Award for
SUDEP Research.
Top: Susan Axelrod speaks to a sold-out crowd.
Bottom: David Axelrod and Barry Donalty greet guests.
Research Conference on epilepsy, Mechanisms of Epilepsy and
Neuronal Synchronization, to be held August 8–13, 2010.
Despite Rain, No Mulligan for Stalwart Golfers
The conference attracts scientists from around the world, who
convene to discuss the complex issues that arise in the processes
of seizure generation and progression. The resulting synthesis of
Beach Park, IL—Five years ago, Lonny Gold came to his
and the course reached capacity. At the end of the day, golfers
current and novel ideas will inform critical next stages of epi-
friends Jim and Susan Schneider—whose daughter Julie
came out of the rain to enjoy raffles, live and silent auctions,
lepsy research, leading to improved understanding of underlying
suffers from epilepsy—with a fundraising idea. The result was
and dinner, at which Lonny was honored for his tireless generos-
mechanisms. CURE Chair Susan Axelrod remarked, “The two pre-
the now extremely successful and much anticipated annual Drive
ity. All proceeds from the event will fund Julie’s Hope Award, a
vious Gordon Conferences have been very successful, with excit-
for CURE, held this year on August 27th at ThunderHawk Golf
three-year CURE Challenge grant.
ing presentations and great synergy. We are confident that the
Club. Despite rainy skies, a record number of golfers registered,
work done at this meeting will translate into improved treatments
and ultimately the prevention of epilepsy in those with known
risk factors.”
Applications for the meeting are due July 18, 2010.
Visit www.grc.org for more information.
Drive for CURE golfers enjoy the day, despite bad weather.
Top: Participants of this year’s Seizure Prediction Workshop
Bottom: Organizing Committee members, Susan Arthurs, Mark Frei, Ivan Osorio, and Hitten Zaveri
10
Lonny Gold and Jim Schneider
To read about Julie’s Hope Award and other CURE grants, visit: www.cureepilepsy.org/research/current.asp
11
EVENT NEWS
Special Evening Sparks
Desire to Help
Cedar Rapids, IA—On June 25th, over 125 guests gathered
in Cabinet Studio, Inc, a beautifully renovated historic building whose space was generously donated for the Cedar Rapids
Benefit for CURE. Hosted by Dale and Sara Todd in honor of
their son Adam, the benefit gave guests the chance to mingle,
while learning about epilepsy and CURE. The event sparked
a desire to help among local families living with epilepsy and
Cork & Culture for CURE
Fore a CURE
Lincoln, RI—Over 275 guests celebrated another of CURE Board
Lincoln, RI—Golfers, volunteers, and other friends of CURE
member LeeAnn Brigido’s successful annual fundraisers for
gathered on a beautiful July day at the annual CURE Clas-
epilepsy research, Cork & Culture for CURE. Held October 23rd
sic Golf Tournament, hosted by Sharon MacBeth, and with
at the Kirkbrae Country Club, attendees enjoyed live music by
great help from CURE Board member LeeAnn Brigido, and
the Christopher James Band, a delectable wine tasting from the
Skip Brown. Sharon and LeeAnn’s sons Casey and Zach have
Savory Grape, and a silent auction featuring original creations by
epilepsy. Held at the Lincoln Country Club, guests enjoyed
local artists and Rhode Island School of Design professors. To
golf, dinner, raffles, and a silent auction. As Casey’s aunt, Kellie
cap off the evening, a moving film portraying a day in the life of
Alves commented, “It was a beautiful day to help find a cure.”
LeeAnn’s nineteen-year-old son Zach, who was diagnosed with
among friends and community members moved by the stories
epilepsy at six weeks old, was shown. The film touched old and
that were shared. Rebecca Lindwall, one of the guests, com-
new supporters alike. Guest Joanne Malise, who attended the
mented, “Sara and Dale Todd do daily battle with epilepsy.
event for the first time this year, remarked, “It was so poignant,
The CURE commitment to medical research inspires confi-
and really conveyed the profound personal effects of epilepsy.”
dence—contributing to CURE is a tangible way to help Adam
To watch the video, visit: www.cureepilepsy.org/video/
and others affected by epilepsy.”
Photo credit: Christine Keene
Top and bottom right: Cedar Rapids guests mingle.
Bottom left: Host Sara Todd
George, Carol Ann, and LeeAnn Brigido, Zach Smith, Sharon and
Casey MacBeth, Skip and Martha Brown
Spreading Hope for a Cure
West Sayville, NY—After months of hard work and great
anticipation, the first annual Gia’s Hope drew a crowd of 100
supporters in honor of Wendy and Anthony Flammia’s daughter
Gia, who suffers from epilepsy. On June 7th, friends of all ages
enjoyed raffles, dinner, and dancing at the West Sayville Country
Linda Poidomani, Emma Catanzaro, and Lisa Dusty
A Swinging Success
Club. DJ Charles Gange donated his services, and Scott Mannis,
Lake Geneva, WI—On June 18th, the Loeffel 21st Annual Golf
who also has epilepsy, performed his own original songs. The
Tournament kicked off another incredible event benefiting CURE.
benefit was a night to remember—filled with hope, fun, laughter,
Over 85 guests put their swing to the test on the golf course
and triumph.
and enjoyed dinner with friends and family afterward. Glenn
Fenster—on a 6,000-mile bike trek across the US and Canada
to raise awareness and funds for epilepsy—stopped for a few
Gia and Wendy Flammia
holes of golf and to share some inspiring words at dinner about
Swimming, Biking, and
Running...All for a Cure
A clinical trial is a research study using human volunteers
designed to determine the safety and effectiveness of a drug,
biologic (such as a vaccine), device, or other treatment or
behavioral intervention. Clinical trials are the fastest way
to find treatments that work in people and methods to improve
health. Participants may also gain access to new research
treatments before they are widely available and help others by
contributing to medical research. For information about clinical
trials, go to: www.clinicaltrials.gov
his son Nyle, who has epilepsy. It was truly a night filled with
In an observational study, researchers observe individuals
heartfelt friendship, epilepsy awareness, and fun.
without changing their treatment to learn more about a disease or medical condition. The Epilepsy Genome/Phenome
Project (EPGP) is an observational study sponsored by the
National Institutes of Health. EPGP is enrolling two types of
Sonoma County, CA—Eric Schumacher braved the Vineman
participants:
Half Ironman to raise funds and awareness for CURE—the
• A person who has been diagnosed with epilepsy who also has
longest distance the triathlonist has ever done. On July 19th,
sporting a CURE t-shirt and encouraged by the rallying cries
a brother or sister with epilepsy of unknown cause; OR
of the crowd, Eric persisted and after a 1.2-mile swim in the
• A person who has been diagnosed with epilepsy due to
Russian River, 56-mile bike ride through the vineyards, and
Infantile Spasms, Lennox-Gastaut Syndrome, Polymicrogyria,
13.1-mile run, he finished in an impressive seven hours. Eric,
Eric Schumacher goes the distance for CURE.
ANOTHER WAY TO GET INVOLVED:
PARTICIPATE IN A CLINICAL TRIAL
Periventricular Heterotopia
who himself has epilepsy, wanted his efforts to be for a good
cause—to raise awareness and money for epilepsy research.
Participation involves a blood draw, interviews, and review of
Guests wait for the helicopter ball drop.
medical records. For more information: www.cureepilepsy.org/
resources/index.asp or 1-888-279-EPGP (3747).
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EVENT NEWS
Boilermakers
Race in Memory
of Chris Donalty
Raising Awareness
to Make a
Difference
Utica, NY—Every July, Boilermaker Week
Sacramento, CA—When the Liotine fam-
draws tens of thousands of people to walk
ily decided to hold a fundraiser in honor
and run in a variety of races, and par-
of their seven-year-old son Cameron,
ticipate in a host of other fun activities.
who was diagnosed with epilepsy at two
Every year, the number of friends and
weeks old, they expected a small group of
family sporting specially designed CURE
supporters. But, through word of mouth
t-shirts in memory of Christopher Donalty
the guest list grew, and their community
grows. Chris died of Sudden Unexplained
rallied to show their support. The Liotines
Death in Epilepsy (SUDEP) as a senior in
raised funds, but also increased aware-
college. This year, 135 participants hon-
ness among their peers, truly making a
ored Chris’s memory, raising public aware-
difference in their community and in the
ness and funds for epilepsy research
fight for a cure.
throughout the week.
Upcoming Events
Paul’s Run Draws
Incredible Support
Join us in raising awareness and research dollars, and meet
great people in the process! Events are cropping up across
Prospect Heights, IL—The first annual
the country. Check out what’s coming up below and reach
Paul’s Run for Epilepsy, a 5K run/walk,
out to organizers, or contact CURE if you want to host your
was a great success, drawing an impres-
own event.
sive 200 participants. Held October 3rd in
Denver Benefit for CURE
honor of Paul Schmidt, a young man who
passed away from Sudden Unexplained
Death in Epilepsy (SUDEP) last year, the
tribute inspired many first-time runners,
college students, and even strangers to
volunteer their time and effort to a worthy
cause. Proceeds from the event will help
fund a CURE SUDEP research grant, and
plans are already underway for the 2nd
Annual Paul’s Run for Epilepsy in 2010.
RAGBRAI cyclists get ready for another day of riding
across Iowa.
Team Cece’s Wild Ride
Iowa—From July 19–25, Team Cece cycled an extraordinary 442 miles for The Register’s Annual Great Bicycle
Ride Across Iowa (RAGBRAI). Peter Cunningham and his
brother Stephen (aka Team Cece) cycled in honor of Peter’s
two-year-old daughter Cece, who was diagnosed last year
with Dravet Syndrome—a progressive form of epilepsy. The
Cunninghams were overwhelmed by the generous hospitality in the small towns along their journey—from traditional
Swedish dance performances, to a skillet-throwing contest,
The Liotine family
Chris Burke of SUNY Delhi runs in memory of
Chris Donalty.
CURE’s Mission
Inspires Golfers
Waukegan, IL—The Bonnie Brook Golf
Course brimmed with golfers as Gewalt
Hamilton Associates, Inc. (GHA) held its
11th annual golf outing on June 17th
to benefit CURE. One hundred and forty
guests hit the links, trying their swing at
three challenge holes with prizes ranging
from gift certificates to a car. GHA VicePresident Michael Shrake, whose 15-yearold daughter Summer has epilepsy, chose
CURE as the beneficiary after hearing
about CURE’s mission and research efforts. Shrake commented that they “look
First and second place winners at Paul’s Run
Another Winning
Hand for Epilepsy
Research
New York Campers
Plan Carnival
Boynton Beach, FL—Rhona Leff’s neigh-
Challenge Camp took on a big task—they
bors know that when she and her friend
designed and ran their very own carnival,
Fran Shorenstein organize a Mah Jongg
with proceeds benefiting CURE. Accord-
tournament, it’s not only going to be fun,
ing to Lori Rotskoff, whose son Benjamin
it’s going to benefit a cause they’ve come
attends the camp, local businesses and
to believe in—epilepsy research. On July
a golf outing at the Hampshire Country
24th, forty women moved from table to
Club supported the campers’ booths and
table throughout the tournament, enjoy-
silent auction. CURE was honored to be
ing the occasion with friends and neigh-
the beneficiary of the budding entrepre-
bors, while raising funds to donate to
neurial flair and creativity of these young
CURE. Fran, Rhona, and their fellow Mah
philanthropists.
to photo ops with Benny, the world’s largest bull. Team
Cece certainly did not have an idle moment to spare, and
embarking on this scenic journey benefiting CURE again
next year.
Supporters golfed in memory of Lauren Marshall.
Teein’ It Up for CURE
Rancho Santa Margarita, CA—Over 120 supporters honored
successful tournament this winter.
for CURE Golf Tournament at Tijeras Creek Golf Course. Lauren, having recently graduated from college, passed away from
Sudden Unexplained Death in Epilepsy (SUDEP) in 2007 at
the age of 24. The event included raffles, silent auctions, a
longest drive contest, and a helicopter drop. The tournament
was a huge success, with more guests than the previous two
years combined. They are already planning next year’s tournaChallenge campers at their carnival
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Rock the Block for Pediatric
Epilepsy Research
Presented by the Valencia
Pointe Women’s Club
Fall 2010
Chicago, IL
info: Kathy Dodd
[email protected] or
Stacey Pigott
[email protected]
February 26, 2010
Boynton Beach, FL
info: Rhona Leff
[email protected]
The CURE Annual
Chicago Benefit
Spring 2010
Chicago, IL
info: [email protected]
Boston Benefit for CURE
Special Guest: Pulitzer Prize-winning
author Doris Kearns Goodwin
Fall 2010
Boston, MA
info: Cynthia Robertson
[email protected]
Contact CURE to find out how to organize a fundraiser
in your area: [email protected] or 800.765.7118.
CURE has new ways to get involved! Check out our website on how to host an event or share your story by creating a custom CURE webpage. Also, check out Chair Susan Axelrod’s new blog and our Facebook page!
Lauren Marshall’s memory on October 24th at the Teein’ It Up
Florida Mah-Jonggers raise money for a cure.
Fall 2010
New York, NY
info: [email protected]
WHAT YOU CAN DO
Jongg-ers look forward to another fun and
future.”
3rd Annual CURE
New York City Benefit
3rd Mah Jongg Tournament
to Benefit CURE
is already pumping their bike tires in preparation for
Bronxville, NY—This summer, the kids at
forward to partnering with CURE in the
January 28, 2010
Denver, CO
info: Kathy Judd
[email protected]
ment, set for October 16, 2010.
3 million Americans 50 million worldwide
hoperesearchcure
our mission
Citizens United for Research in Epilepsy (CURE) is a
nonprofit organization dedicated to finding a cure for epilepsy
by raising funds for research and by increasing awareness of
the prevalence and devastation of this disease.
Due to the passion and generosity of families, friends, and
volunteers, over 94% of funds donated support critical
research and awareness programs.
cure is a nonprofit 501 (c)(3) organization supported by the generous
contributions of individuals, corporations, and foundations.
©2009 Citizens United for Research in Epilepsy. All rights reserved.
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