Spring - Epilepsy Foundation of Michigan

Spring 2007
HEADLINES
20300 Civic Center Dr.,
Suite 250
Southfield, MI 48076
(248) 351-7979 • Fax: (248) 351-2101 • www.epilepsymichigan.org
IN THIS ISSUE
From the
President ................ 2
Camp Discovery ....... 3
2007 Summer Stroll
Update .................... 3
Research in Progress:
Women with
Epilepsy .................. 4
Family Weekend
Retreats ................. 5
2007 Winning
Kids ...................6-7
Calendar
of Events................. 8
www.epilepsymichigan.org
1
BOARD OF DIRECTORS
Gregory L. Barkley, MD
Christine Bernhard Viegas, Esq.
Nick Broggi
Katie Cather
Michael L. Collins, CPA
Dennis K. Egan
John R. Elkins
Elizabeth A. Garofalo, MD
Steven J. Guarini, CPA
Todd Hohauser
Shelley Irwin
Gerald R. Johnson, Jr.
David P. Kapelanski
Sharon Leenhouts
James J. Madaus, CPA
Terri A. Murray
Richard A. Polk
Ilise Rosen
Colette Russell
Mel Sternfeld
Delores Gardner Stokes
Andrew N. Vanchick
Arlene S. Gorelick, MPH
President
PROFESSIONAL
ADVISORY COMMITTEE
Amer Aboukasm, MD
Glenn N. Ackerman, MD
Judy Ahn-Ewing,
R.EEG/EP T., CNIM
Imran Ali, MD
Yasser Awaad, MD
Gregory L. Barkley, MD
Stephanie Bayma, RN
Harry Chugani, MD
Jules Constantinou, MD
Denise Cooper
Diane K. Donley, MD
Jonathan C. Edwards, MD
Daniel Fain, MD
Tessy Jenkins, MD
Sucheta Joshi, MD
Jay Kaner, DO
Jeffrey A. Loeb, MD, PhD
Daniela Minecan, MD
Michael Nigro, DO
Debra M. O’Donnell, MD
Robert Rothermel, PhD
Oren Sagher, MD
Brien Smith, MD
Marianna Spanaki-Varelas, MD
Thomas Swanson, MD
Adriana Tanner, MD
Timothy K. Thoits, MD
Craig Watson, MD, PhD
STAFF
Arlene S. Gorelick, MPH
President
Tyler MacEachran, MPA
Vice President
Duc Abrahamson
Special Events Coordinator
Pamela Bird
Administrative Coordinator
Sheryl Darroch, MSW
Health Educator
Pat Dennis, Accountant
Russ Derry, MPH
Director of Education
Cynthia L. Handford, RN
Education Specialist
Andrea Schotthoefer
Marketing Manager
Brianna Romines, MPA
Manager of Special Events
Mia
2 Cooke, MSW, Health Edu.
From The President
Have you ever gone to the pharmacy and or received your
prescription by mail and noticed that the pills you received looked
different than last time? You were probably suspicious that a
mistake had been made, so you contacted the pharmacist. When
you asked the pharmacist about it, he or she might have replied
there was no mistake, that you got the right prescription. It was just
as good as the one you had last time. They may even have told
you that they saved you money on this prescription.
But maybe, like many people with epilepsy, you were still
concerned. Would this medication really give me the same
seizure control as what I have been taking? You may have even
been switched once before, and had the experience of having a
breakthrough seizure.
We get calls about this from people who have had adverse effects.
I remember a mother who called to tell us that her medication had
been switched at the pharmacy, and then she had a seizure. This
created a lot of problems for her. She could not drive and pick up
her children from school.
It has become common practice for pharmacies to substitute generic for brand name medication
if available. They also buy different generics from time to time depending on price and
availability. Sometimes, they may even substitute another medication in the class. In general,
generic medications are as effective as the brand name. With epilepsy medications, the picture
is a little more complex.
New studies are showing that this common practice is causing a rise in breakthrough seizures
and adverse effects. To be approved, a generic medication must be within 80 to 125 percent
of the branded product. This difference is a cause of concern. A person may do quite well on a
generic from one manufacturer, but then have problems if switched to a medication made by
another.
The Epilepsy Foundation is very concerned about the impact of switching from one form of a
drug to another without the consent of the patient and the physician. To that end, we will be
working on legislation that would protect people with epilepsy from switching without consent.
Do you have a story to tell about having your medication switched which caused you to have
a seizure? We would like to share your story with policy makers at our upcoming 9th Annual
Legislative Recognition Breakfast, scheduled for May 8 in Lansing. I invite you to come to the
event and meet your Michigan Representative and Senators. The event is free, so be sure to call
or email us to register.
We are also interested in your story so we can relay them as a group to the legislators. Please
call or send us your story about how a change in your medication by the pharmacy impacted
your life. We are committed to enlightening legislators about the problems you are facing, so
please help us share your story.
Established in 1948, the Epilepsy Foundation of Michigan is the only statewide
non-profit organization focusing on epilepsy. The Epilepsy Foundation provides
Public Education & Awareness Programs, such as Seizure First Aid Training and
Living Well Workshops, which are designed to enrich the quality of life for all
persons affected by epilepsy; Advocacy Programs; and Education & Consultation
Services including toll-free phone services, video library and literature.
Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN
SPRING 2007
JUNE 2, 2007
CELERY FLATS, PORTAGE,
KALAMAZOO COUNTY
Come out to the location of your choice and
stroll with us as we spread epilepsy awareness
through this great fundraising event! Join us for
music, food, prizes, activities, and much more.
In past years we have set a suggested minimum
of $40. The Epilepsy Foundation of Michigan has
now chosen to institute a $20 registration fee.
We need your help in raising this vital funding
that provides necessary programs and services to
the entire state. Come join us and our dedicated
participants as we join efforts to strengthen our
mission: not another moment lost to seizures.
JUNE 9, 2007
DETROIT ZOO,
ROYAL OAK
JUNE 16, 2007
6TH STREET
BRIDGE PARK
RIVERWALK,GRAND RAPIDS
JUNE 30, 2007
BAYFRONT PARK,
PETOSKEY
Make sure you register in advance by logging on to our website, www.epilepsymichigan.org or by calling our hotline at
800-377-6226 ext. 1-217. It is quick and easy to register and fundraise using our secure, online fundraising service!
EPILEPSY FOUNDATION OF MICHIGAN PRESENTS
The Epilepsy Foundation of Michigan
cordially invites you to attend our
SPRING OPEN HOUSE
WEDNESDAY, MARCH 28, 2007
4 PM – 7 PM
Southfield Office
20300 Civic Center Dr., Ste. 250
Southfield, MI 48076
Please join us for this special occasion where
you, your family and your friends will have an
opportunity to meet and greet with Foundation
staff and take a tour of our office. Pictures
of our programs and events will be on display
for your enjoyment and an assortment of
refreshments and beverages will be provided.
Please RSVP by March 23,
248-351-7979, ext. 1-236 or via email
at [email protected]
August 19, 2007 – August 23, 2007
(Grades 3-10)
The Epilepsy Foundation of Michigan’s Camp Discovery provides
youth with epilepsy a safe, structured and encouraging home away
from home for 5 days and 4 nights.
CANOEING & KAYAKING • HORSES
ARTS & CRAFTS • SWIMMING
AND MUCH, MUCH MORE!
Camp Discovery will be held at Sherman Lake YMCA
Outdoor Center in Augusta, Michigan. Staff includes
Foundation staff, pediatric neurologists, and Registered
Nurses. Financial assistance is available.
For a camper application, or to sponsor a camper,
please call 1-800-377-6226, ext. 1-231 or Email:
[email protected]. Space is limited, and
demand is ever-growing, so call today!
For more information on Epilepsy Foundation programs,
visit www.epilepsymichigan.org.
www.epilepsymichigan.org
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THE IRA ROLLOVER
The IRA Rollover allows taxpayers
to donate up to $100,000 annually
from their IRAs tax free to charitable
causes. Donors don’t get a tax
deduction for the gift, but the money
is excluded from taxable income
when computing taxes, so the
effect is the same. However, this
opportunity is only available through
the year 2007. If this is something
you are interested in or would like
more information, please contact us
at 800-377-6226 x 1-217.
A few things about the IRA Rollover
provision and its limitations:
• Only taxpayers age 701⁄2 can take
advantage of the provision.
• It only applies to gifts made in tax
years 2006 and 2007.
• The maximum amount that can
be rolled over tax-free each year is
$100,000.
• The provision only allows for
direct, cash gifts to a qualified,
nonprofit institution (i.e., a 501(c)(3)
charitable organization). For example,
money could NOT be directed to a
donor-advised fund.
RESEARCH IN PROGRESS:
Recent Research Findings
for Women with Epilepsy
Women with epilepsy face several unique challenges in managing their
condition. Many women, however, are not aware of these challenges and how
to deal with them. The consequences of this can be serious, including
congenital disabilities, increased seizures, osteoporosis, infertility,
sexual dysfunction, polycystic ovary syndrome, and depression.
Fortunately, a great deal of research is being done to improve our
understanding of health issues faced by women with epilepsy. The
following are brief summaries of just some of the recent studies in this area:
Veliskova (1) highlighted the complex relationship between estrogen and
seizures and called for further study in this area. Estrogen has long been known
to have pro-convulsant properties, but has recently been shown to also have
anti-convulsant properties in certain circumstances. Whether estrogen provokes
or suppresses seizure activity depends on a number of factors including levels of
other hormones, the type of estrogen involved, the region of the brain involved,
and seizure type. Estrogen has also been shown in animal studies to have
neuroprotective effects on seizure-induced damage to the hippocampus.
Harden et al. (2) conducted a randomized, double-blind, placebo-controlled trial
of the effect of hormone replacement therapy (HRT) on seizure frequency in
postmenopausal women with epilepsy. The study found that HRT was indeed
associated with a dose-related increase in seizure activity. HRT may also
decrease lamotrigine levels.
Lofgren et al. (3) studied 148 women with epilepsy to determine the effects
of different epilepsy types and antiepileptic drugs on reproductive endocrine
function. They found that idiopathic generalized epilepsy and valproate were
associated with an increased risk of reproductive endocrine disorders, including
hyperandrogenism, polycystic ovaries, and polycystic ovary syndrome.
WOMEN & EPILEPSY FORUM
May 11, 2007
8:00 a.m. - 4:00 p.m.
Sheraton Detroit Novi
211 Haggerty Rd. Novi, MI 48375
TOPICS:
Women & Epilepsy: An Overview
Epilepsy In The Childbearing Years
Depression In Women With Epilepsy
Women’s General Health Issues
Psychogenic Nonepileptic Seizures
Epilepsy & Relationships: Panel Discussion
For more information or to attend,
call 1-800-377-6226 ext. 1-302
Continuing Nursing Education: Participants may
receive a maximum of 5.1 contact hours as
approved by Michigan Nurses Association.
FEES:
Conference cost is $25 and
includes lunch and refreshments.
Conference is FREE for Detroit Wayne County
Community Mental Health staff and consumers.
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Turner et al. (4) studied 70 pregnant women, half with
epilepsy and half without, and found that 29% of the
patients with epilepsy developed postpartum depression
as compared to 11% percent of controls. This represents
a significant increase in risk.
Vazquez et al. (5) conducted an online survey of women
with epilepsy. Respondents were asked to rate their
concern about how their antiepileptic medication affected
pregnancy, weight, bone health, menopause, birth control,
and sexual function. Women were most concerned with
bone health and weight gain, with over 60% reporting they
were “very concerned” or “extremely concerned” about
each. For women under the age of 35, pregnancy was the
top concern. Despite these concerns, knowledge about
these topics was limited, with only between 31 and 54% of
respondents reporting that they were “knowledgeable” or
“very knowledgeable” about the topics. In addition, 55% of
respondents felt that their physician did not provide enough
information on women’s health issues and epilepsy.
To learn more about these and other important topics,
please consider attending our Women and Epilepsy Forum.
For article references, call 1-800-377-6226 ext. 1-218.
Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN
SPRING
SPRING
2007
2007
SOUTHEAST
MICHIGAN WEEKEND
Family Retreat
A family retreat for children
with epilepsy and their
families.
May 18-20, 2007
At Ramada Inn Downriver
20777 Eureka Rd.
Taylor, MI 48180
WEST MICHIGAN FAMILY WEEKEND RETREAT
Our first West Michigan Family Weekend Retreat was a huge success! It was held February
16-18 in Kalamazoo with 44 family members representing 13 families. The attendees
spent the weekend “building stronger relationships” through psycho-educational sessions,
team-building activities, group discussions, and social activities. One attendee had this
to say when asked if she would recommend the retreat to another family: “Yes, It shows
that you are not alone and that you are stronger than you knew.” Retreat attendees also
had the chance to network with each other and build lasting friendships. Thank you to our
volunteers, especially Stephanie Bayma, RN from Bronson Pediatric Neurology, who was
our behind the scenes coordinator for the weekend. Thank you also to all of the families
who attended. We look forward to having the same success at our Southeast Michigan
Family Weekend Retreat in May.
LEGISLATIVE BREAKFAST AND
“MICHIGAN KIDS SPEAK UP” DAY
SPEAK UP, BE HEARD!
The Epilepsy Foundation of Michigan cordially invites adults
and youth (ages 8-16) to attend this important event.
TUESDAY, MAY 8TH
Mackinac Room, Anderson House Office Building
124 North Capitol, 10-South
PO Box 30014, Lansing, MI 48909-7514
Legislative Breakfast (For: Adults and youth)
8:00-9:30 AM
“Michigan Kids Speak Up”
(For: Youth ages 8-16)
10:00 – 3:00 PM
Legislative Workshop,
Meet with Legislators,
Speak Up, Be Heard! Luncheon,
Tour of the Capitol Building
& View Legislature in Action
On this retreat
you can expect to:
Have Fun
Discover Strengths
Build Stronger Family
Relationships
Develop New Skills
Face Challenges
Meet Other Families
All children who attend
must be between the
ages of 8 and 18.
Sorry, no daycare
available at this time.
Space is limited,
so call today!
Call Sheryl Darroch at
(800) 377-6226, ext. 1-231
for more details or for
an application.
Please RSVP by May 1st to Pam Bird at
800-377-6226 ext. 1-204 or e-mail [email protected].
www.epilepsymichigan.org
55
2007 Winning Kids
These young heroes represent all of the children throughout Michigan affected by epilepsy.
They remind us not just of the special challenges that all people with epilepsy and their families
face, but of all that can be accomplished despite the obstacles that challenge them daily.
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Kevin Smith
14 years old
Grand Blanc
Ashley Mokma
12 years old
West Olive
Brittany Harris
10 years old
Lincoln Park
Joey Hamill
14 years old
Bloomfield Hills
Sarah Valente
14 years old
Sterling Heights
Christian Parrot
13 years old
Detroit
Caitlyn Gauck
9 years old
Belding
Austin Burnette
15 years old
Livonia
Lisa Fedel
13 years old
Ann Arbor
Kayleen Hudson
14 years old
Portage
Elden Palmer
8 years old
Madison Heights
Destiny Norris
16 years old
River Rouge
Mary Scovel
14 years old
Grand Rapids
Nicholas Westphal
13 years old
Port Huron
Tiffany Lepage
14 years old
Jackson
Headlines:
Headlines:
THE EPILEPSY
THE EPILEPSY
FOUNDATION
FOUNDATION
OF MICHIGAN
OF MICHIGAN
SPRING 2007
My Winning Kid
By Jean Eridon
Of course, every parent thinks their child is a winner, and this
is as it should be. However, Lisa has become a winner not only
in her parents’ eyes, but also to those in her community.
At the age of five, Lisa was involved in a fatal accident which
killed her older sister. She sustained a traumatic brain injury
and was in a coma. Her prognosis was grim, but she beat
the odds and survived. Not only did she survive, but she
recovered to an extent which was wholly unexpected. As
with any traumatic brain injury, Lisa endured intense therapy
to regain full function. Of course, therapy included grief
counseling to deal with the loss of her beloved older sister.
Her world had changed in so many drastic ways and we
thought the worst was behind us until the seizures tried to
take over her life.
Lisa’s epilepsy began with the accident, but she was not
diagnosed with temporal lobe epilepsy until five years later,
after she went into status epilepticus. During these years she
endured feelings of panic, dread and confusion common to
temporal lobe epilepsy on a regular basis. Of course, outsiders
had their ideas why Lisa would panic; often saying it was all
in her head - after all, hadn’t she survived a terrible accident?
However, Lisa never let the seizures curb her enthusiasm.
She has tried her hand at tennis, gymnastics, swimming,
basketball, theatre, dance, music and horseback riding.
What makes Lisa a winning kid in our eyes is that despite
all that has happened, she reaches out to others by
doing volunteer work both in her church as well as in the
community. Last year, she led Vacation Bible School with her
youth group, and she has been active in the local YMCA Youth
Volunteer Corps for the past two years. This spring, she hopes
to become a volunteer coach with Girls on the Run, which
empowers girls in grades 3-5 via running programs. An alumni
herself, she is excited about the opportunity to encourage
younger girls to reach their goals and maintain self-esteem.
She also took the time to meet with another girl with epilepsy
who was facing hospitalization, offering her support. In 2006,
she earned the President’s Volunteer Service Award.
Of all she has endured, epilepsy has been the most
debilitating. She continues to look for medication which will
control her seizures without terrible side effects. It is a difficult
process witch affects her stamina, but not her heart. As she
searches, Lisa is meeting the challenges of this disorder head
on and remains determined not to let epilepsy dim her spirit.
Without a doubt, she’s a Winning Kid!
IF YOU HAVE A STORY TO SHARE,
CALL 1-800-377-6226 EXT. 1-218 OR E-MAIL
[email protected].
www.epilepsymichigan.org
WHAT EPILEPSY IS TO LISA
By Lisa Fedel
Kids with epilepsy are winning kids. No matter what
other people (who don’t understand) say, they’re
winning kids. That makes me a winning kid.
No one with epilepsy is weak. In fact, I think kids
with epilepsy are stronger than kids who don’t
have it. We have to deal with the regular kid issues
– school, parents and friends – along with seizures,
which sometimes can make a kid feel alone. For
instance, some kids think epilepsy is contagious
and they avoid me. I know it is not contagious. I
got epilepsy from an accident; I didn’t catch it from
anyone. I tell people this, but they never believe
me.
My seizures are unpredictable, so I need a good
night’s rest. This means I miss out on things
because I need sleep. Sometimes I have to cancel
my plans if I’m not feeling well because I didn’t
get enough rest. It’s disappointing, but I try to be
flexible.
Having epilepsy means I have to go to the doctor
A LOT!!! I take a lot of different medications, and
keep a really close record of side effects. This
means I have to pay attention to my health. If I have
butterflies in my stomach, it could be my epilepsy
acting up, or maybe just nerves. It’s important to
know the difference. Butterflies are OK, seizures are
NOT.
Epilepsy makes me miss a lot of school. It’s really
hard trying to catch up on my work when I miss a
lot of classes. I try to get my assignments done
early in case I get sick and can’t work on them, but
that leaves me feeling rushed. Sometimes I think
it would be a lot easier without epilepsy, but then I
realize that if I didn’t have it, I wouldn’t do many of
the things I push myself to do.
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CALENDAR OF EVENTS
MARCH
March 23
Youth & Epilepsy
A Panel Presentation
(St. Clair County)
March 24
EEG Event
Bowling and Pizza Party
(Sterling Heights)
March 27
Pictures of Hope
(Southfield Office)
March 28
Spring Open House
(Southfield Office)
APRIL
April 19
Pictures of Hope
(Southfield Office)
April 22
EEG Event
Detroit Tigers Game
(Detroit)
MAY
May 8
Kids Speak Up!
& 9th Annual Legislative
Recognition Breakfast
(Lansing)
May 8
Pictures of Hope
(Southfield Office)
JULY
EEG Event
Beach Party
(Waterford)
Date TBD
May 11
Women & Epilepsy
Forum (Novi)
May 12
EEG Event - CJ Barrymore’s
Go Carts, Pizza and More
(Macomb County)
May 18 – May 20
Southeast Michigan Weekend
Family Retreat (Taylor)
JUNE
June 2
Kalamazoo Summer Stroll
for Epilepsy
June 9
Detroit Summer Stroll
for Epilepsy (Detroit Zoo)
July 12
Pictures of Hope
(Southfield Office)
July 23
2ND Annual Paul Neu
Memorial Golf Classic
Grand Rapids
September 22
EEG Event
Apple Orchard/ Pumpkin Patch
September 25
Flame of Hope
(Southeast Michigan)
September 29 – September 30
Southeast Michigan
Weekend Adult Retreat
(Taylor)
OCTOBER
July 28-29
West Michigan Adult Retreat
(Kalamazoo)
October 19
Detroit Epilepsy Today
Conference
AUGUST
October 25
Grand Rapids Epilepsy
Today Conference
August 1
Summer Open House
(Southfield Office)
August 11
EEG Event
Detroit Shock Game
(Auburn Hills)
June 16
Grand Rapids Summer
Stroll for Epilepsy
June 30
Petoskey Summer
Stroll for Epilepsy
August 19 – August 23, 2007
Camp Discovery
June 19
Pictures of Hope
(Southfield Office)
SEPTEMBER
September 20
Flame of Hope
(West Michigan)
NOVEMBER
EPILEPSY AWARENESS MONTH
November 13
Port Huron Epilepsy Today
Conference
DECEMBER
December 4
Gallery of Hope
(Birmingham)
20300 Civic Center Dr.,
Suite 250
Southfield, MI 48076
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Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN
SPRING 2007