Spring 2015 - Epilepsy Foundation of Western/Central Pennsylvania

A BI-YEARLY NEWSLETTER OF THE EPILEPSY FOUNDATION WESTERN/CENTRAL PENNSYLVANIA
Spring/Summer Newsletter 2015
EPILEPSY FOUNDATION
Western/Central Pennsylvania
www.efwp.org
Accept The
Epilepsy
rap challenge
In This Issue
3
Letter from the President
and CEO
4
Spotlight on...
IEP/504 Plans
The Epilepsy Foundation Western/
Central Pennsylvania leads the fight
to stop seizures, find a cure, and
overcome the challenges created
by epilepsy.
Parent Education
Workshops
Camp Frog
5
Spotlight on...
Studio E
Respite Care Program
6
Mardi Gras Gala
7
8
9
#EpilepsyRapChallenge
Emmai and Patrice Alaquiva. Emmai is an
Emmy Award-winning producer and he
directed the “How We Do It” rap video for
the 2015 Mardi Gras King’s entrance.
Epilepsy Run/Walks
Westmoreland Sports
Dinner and Auction
Legislative Advocacy
10 Upcoming Events
11
Back Page News
ON THE COVER: Peggy “Peggy B”
Beem-Jelley raps for epilepsy in the
“How We Do It” video.
Laila Carey loved the stuffed penguin she
received from Santa at the Harrisburg
Holiday Party.
Each year the EFWCP staff dress up in costumes
for the Mardi Gras Gala.
Charlie Houston was excited about what
he got from the gift exchange at the
Pittsburgh Holiday Party.
On November 14, 2014, the Johnstown Tomahawks hosted a group night where
Chuck-a-Puck tickets were sold to support the EFWCP.
Visit www.efwp.org or contact one of our offices:
Pittsburgh Office
Johnstown Office
Harrisburg Office
1501 Reedsdale Street
Suite 3002
Pittsburgh, PA 15233
Commerce Centre
1001 Broad Street
Suite 240
Johnstown, PA 15906
3507 Market Street
Suite 203
Camp Hill, PA 17011
412-322-5880
800-361-5885
412-322-7885 Fax
page 2
814-262-7494
814-262-7495 Fax
717-730-6779
800-336-0301
717-730-6727 Fax
Epilepsy Foundation Western/Central Pennsylvania
A Note from the
President and CEO...
EFWCP Board and Staff
Policy Board
No matter how long the winter, spring always
arrives! And here at the Epilepsy Foundation
Western/Central Pennsylvania (EFWCP) we
are gearing up for a busy summer filled with
lots of activities and events. Before I tell you
about some of those events, I want to be sure
to thank some folks.
Deborah Rice-Johnson
Board Chair
We enjoyed a bountiful holiday season and
I thank all of you who shared your seasons
Peggy Beem-Jelley
greetings with us and donated to our end
President and CEO
of the year annual giving campaigns. Your
generosity is amazing and will help to sustain us throughout the year!
We absolutely want to thank Mr. David Malone and all of his dinner chairs
for everyone’s help with our Annual Mardi Gras Gala. In February, the 21st
Mardi Gras Gala honoring King David Malone, President & CEO of Gateway
Financial was a tremendous event. In fact, it was our most profitable
gala in history raising well over $500,000 in corporate sponsorships and
donations. WOW! And David Malone didn’t stop there! King Malone
and his dinner chairs produced a remarkable rap video and launched the
“Epilepsy Rap Challenge”. We want you to make and post a rap video
to share your message, make a $26.00 donation in honor of the 1 in 26
Americans who will develop epilepsy and challenge others do the same,
use the hashtags #1in26 and #EpilepsyRapChallenge! (Turn to page 6 to
read more about the 2015 Mardi Gras Gala and the #EpilepsyRapChallenge.)
Spring always brings with it our annual battle to maintain some sort of
state funding for epilepsy programs. Sadly, Governor Tom Wolf did not
include an appropriation for epilepsy services in his first budget proposal.
So, the EFWCP, along with the EF Eastern PA, will be hosting an advocacy
day in our state capitol on Tuesday, May 5, 2015. If you are interested in
participating in the advocacy day, please contact us at [email protected].
Plan to participate in one or more of our summer run/walk events for
epilepsy. These events help to raise both awareness and revenue for our
organization and our mission. The EFWCP will be in Johnstown on May
30 and Erie on June 6 for the Highmark Walk for Healthy Communities.
Here in Pittsburgh the Family Run/Walk Event for Epilepsy will take place
on July 25 at PNC Park. And, we will once again meet on City Island in
Harrisburg for the Senators Run/Walk for Epilepsy on August 25, 2015.
The EFWCP will also be visiting a number of local communities to host
education and program events throughout the next several months. You’ll
find a calendar of events in this newsletter and I hope that you and your
family will join us at these events in the coming months.
As the earth renews itself over the next few months and spring turns into
summer, so too will the EFWCP renew its commitment to our mission to
serving as many individuals and families as possible and to leading the
fight to stop seizures, find a cure, and overcome the challenges created by
epilepsy.
Many, many thanks for your on-going help and support.
We’re Social, are you?
efwcp (Instagram)
facebook.com/efwcp
y
Pegg
Russ Allen
Joyce Bender
Theresa Bone
Louis Catalano, M.D.
James D. Chiafullo, Esq.
Patricia Crumrine, M.D.
Eugene DeFrank
Scott Heeter
Jack K. Hinds
John Kreider
Mark R. Kuczinski, CPA
Judge Maureen Lally-Green
Carole Lane
Ed Little
Theresa MacLean
Sandra McAnallen
James H. Norris, Esq.
Daniel P. Orie, Esq.
P. Jerome Richey, Esq.
James Valeriano, M.D.
Advisory Board
Miya Asato M.D.
Jill Bischoff, CRNP
Kevin Kelly, M.D., PhD
Donald Middleton, M.D.
Carol J. Schramke, PhD
Anne C. VanCott, M.D.
Rajiv Varma, M.D.
Emeritus Board
Dick Barton
Douglas Dick
Lawrence Leventon, Esq.
Richard M. Ryan
Thomas Trimm, Esq.
Staff
Peggy Beem-Jelley
President and CEO
Rick Boyle
Special Projects Director
Brandi Brukner
Start SMART Service Coordinator
Chelsea Fallier
Regional Coordinator, Johnstown
Colleen Fulkerson
Special Events Coordinator
Lynne Gensamer
Financial & Benefits Administrator
Jordan Hinds
New Initiatives Coordinator
Gretchen Knaub
Regional Director, Capitol Region
Laura Norris
Executive Office Manager
Francine Reyher
Adult Services Coordinator
Amanda Stein
Children & Family Services Coordinator
Laura Stufft
Community Education & Events Coordinator,
Capitol Region
Andrea Zonneveld
Community Education & Events Coordinator
@efwcp (Twitter)
Spring/Summer 2015 Newsletter
•
pinterest.com/efwcp
www.efwp.org
page 3
Spotlight on... IEP/504 Plans: It’s Time to Start Thinking About Next Year!
The school year is nearing an end
and there are a few things you
can be doing with your child’s
Individualized Education Plan (IEP)
or Section 504 Plan to make sure it
is at its best and ready for the next
school year.
For those of you with an IEP Plan:
* Read over your child’s entire
IEP. Make sure the content is
current – consider things like your
contact information, your child’s
diagnosis, etc. – and make notes
on what, if anything, should be
updated.
* Review the measurable annual
goals that are written into the
IEP and think about where your
child stands in terms of reaching
or passing those goals. If you’re
not sure how your child is
progressing with their IEP goals,
you can reach out to the lead
IEP teacher to ask for a progress
report. If you don’t think that
your child is making progress
towards their IEP goals, you will
want to address that in the next
IEP meeting.
* Review the transition services
Parent
ion
Educat
Events
section of the IEP if your child is
transition age (14+). Consider
how your child is progressing
towards the transition activities
and services listed in each postschool goal area of the transition
charts in the IEP.
If there are only a few minor
adjustments you need to make,
you can reach out to the lead IEP
teacher to make those changes. If
more major changes need to be
made, make a note to discuss them
at the next IEP meeting or request a
meeting.
For those of you with a 504 Plan:
* Review the content regarding
diagnosis, accommodations, and
contact information.
* Updating information about the
diagnosis and contact information
can be done with a phone call
or email to the staff that handles
your child’s 504 Plan.
* If you are concerned about the
accommodations (either not
being followed or not being
enough), request a meeting to
discuss how the staff can address
those concerns.
Keeping an open line of
communication with your child’s
IEP/504 team regarding updates to
the plan can be just as productive as
having an IEP meeting. Of course,
if you have a lot of concerns with
the progress of your child’s IEP/504,
you always have the right to call a
meeting when you feel the need
to discuss serious issues. Making
sure your IEP/504 Plan is up to date
and on track towards reaching your
child’s goals is a great way to end
the school year.
EFWCP staff are available to answer
questions, provide information
and referrals, and to help you
understand your child’s IEP/504.
Did you know?
You can incorporate seizure
recognition and first aid training
for teachers, nurses, and other
staff into your child’s IEP in the
“Support for School Personnel”
section.
The EFWCP can provide the
training free of charge to the
school as part of the Project
School Alert program.
Join us for Camp Frog!
For more information on your nearest Camp Frog session, please contact
your local camp coordinator:
Camp Conrad Weiser
Camp Fitch
Wernersville, PA
June 21-27, 2015
North Springfield, PA
July 5-11, 2015
York, PA
Pre-register by April 17, 2015
Registration must be completed
by May 22, 2015
Pre-register by May 1, 2015
Registration must be completed
by June 5, 2015
Call 800-336-0301 for more
information or to register.
Contact Gretchen Knaub
at 800-336-0301
or [email protected].
Contact Amanda Stein
at 800-361-5885
or [email protected].
April 25, 2015
Pittsburgh, PA
April 25, 2015
Call 800-361-5885 for more
information or to register.
Erie, PA
May 16, 2015
Call 814-451-1135 for more
information or to register.
page 4
Epilepsy Foundation Western/Central Pennsylvania
Spotlight on... Studio E: The Epilepsy Art Therapy Program
Studio E: The Epilepsy Art Therapy
Program participants work with
an art therapist and peers with
epilepsy in a group setting to
strengthen their artistic voice,
learn from others in an open and
welcoming environment, and create
artistic pieces by experimenting
with a variety of mediums. No art
skills are required for the program
– it is open to teens and adults of all
art abilities!
For many people, art therapy is
a new experience and you may
be wondering what to expect.
Art therapy can help people
sort through feelings that are
sometimes too difficult to verbalize
– simply put, art helps you express
yourself. The creative process of
art can help to resolve conflicts,
develop interpersonal skills,
manage behavior, reduce stress,
improve coping skills, and much
more. Living with epilepsy can be
challenging and art therapy may be
beneficial in working through how
the condition impacts an individual’s
life.
Studio E is a free, multi-week
program for adults and teens
living with epilepsy, and is typically
offered once or twice a year for
different age groups. Currently,
Studio E is being held in Etna, PA for
teens aged 13-18. Our next session
of Studio E is in the planning stages
but is tentatively set for late spring
in Westmoreland County. Studio
E even makes appearances at the
Camp Fitch location of Camp Frog
in the summer.
This artwork, entitled “Passion,” was created
using mixed media by Debbie Beachler.
She explained, “I loved using the different
materials together. I wanted to make my
pieces more sensory. The movement of
water has always been a safe haven for me.
The movement and color is my life growth.”
This is one of many Studio E pieces that
was showcased in a special exhibit at The
Andy Warhol Museum in 2013.
If you would like to learn more about Studio E,
contact Amanda Stein at 800-361-5885 or [email protected].
Studio E is sponsored by Lundbeck. For more information
about Studio E and to see art created through this program,
visit www.yourpartnerinepilepsy.com.
Respite Care Program
The EFWCP launched a new Respite
Care Program at the end of 2014 to
support caregivers of children and
adults with uncontrolled seizures.
Respite is temporary relief from the
ongoing responsibility of caring
for an individual of any age with
uncontrolled seizures.
The new Respite Care Program
differs from other programs.
“There are people we work with
who have a child who has such
severe seizures that they never
get a break,” explains EFWCP
President and CEO Peggy BeemJelley. “I have spoken to parents
who have not been able to go out
to dinner together in the past 10
years because they cannot afford
services at the level of care their
child requires.”
The EFWCP will pay for skilled
nursing care for applicants.
Spring/Summer 2015 Newsletter
•
Here are some important things to
know about this program:
* Each family will be eligible for
25 hours of free care in a oneyear period. This is a temporary
program with no guarantee of
ongoing care.
* EFWCP staff will help you choose
the respite care provider from our
approved agencies.
* Respite care services will be
provided in the applicant’s
home by skilled nurses. Services
provided may vary depending on
the provider.
* To be eligible for this program,
you must live in the EFWCP’s 49
county service territory.
* Applicant’s physician must
provide documentation of an
active diagnosis of epilepsy/
seizure disorder and a
recommendation for respite care
services.
www.efwp.org
For more information or to apply
for assistance from the Respite
Care Program, please contact
Jordan Hinds at [email protected]
or 800-361-5885.
page 5
21st Annual Mardi Gras Gala
The 21st Annual Mardi Gras Gala was held on Fat Tuesday,
February 17th at the Westin Convention Center Pittsburgh.
David Malone, President and CEO of Gateway Financial,
was honored as the King of Mardi Gras. With Mr. Malone’s
tireless work and the support of his dinner chairs, the event
raised over half a million dollars!
The Mardi Gras Gala is a fundraising event that honors a
community leader for their commitment and dedication to
the Pittsburgh region. The event is traditionally supported
by the corporate community and their pledge to sponsor
a table/tables. The event has become one of Pittsburgh’s
premier social gatherings and has been sold to capacity
since its inception. If you would like to confirm your table
and celebrate Fat Tuesday 2016 with the EFWCP please
contact Colleen Fulkerson at [email protected] or
412-322-5880.
EFWCP Board Chair, Deb Rice-Johnson, Mardi Gras King
David Malone, and EFWCP President and CEO, Peggy
Beem-Jelley take a moment to pose for pictures before
letting the good times roll! Photo by Mary Jane Bent.
Thumbs up for Mardi Gras King David Malone and his dinner chairs. From left: John Matlak, Carrie Coghill, Art Rooney II, Jerry MacCleary,
David Malone, Richard Harshman, David Shapira, Leo Gerard, and Sy Holzer. Photo by Mary Jane Bent.
Thank You to Our Mardi Gras Sponsors!
$25,000 Fleur De Lis
Sponsors
$15,000 French Quarter
Sponsors
Allegheny Technologies
Incorporated
Bayer MaterialScience
Coghill Investment Strategies
Giant Eagle
$10,000 Bourbon Street
Sponsors
Dick’s Sporting Goods, Inc.
Huntington Bank
I.B.E.W. Local Union #5
Pittsburgh Steelers
Hefren-Tillotson, Inc.
Trumbull/PJ Dick/Lindy
Paving
Highmark
USW
PNC Bank, Pittsburgh
UPMC Health Plan
page 6
Epilepsy Foundation Western/Central Pennsylvania
#EpilepsyRapChallenge
What is the #EpilepsyRapChallenge?
The #EpilepsyRapChallenge encourages people to donate $26 in support
of the 1 in 26 Americans who will develop epilepsy in their lifetime, and
then create an original rap video to challenge their friends to do the same.
How did the #EpilepsyRapChallenge start?
We want to give a special
thanks to all of the families
and Pittsburgh CEOs who
were an integral part of the
filming of the “How We Do
It” video!
We could not have
done it without you!
Become a part of the
#EpilepsyRapChallenge!
Donate.
Visit www.efwp.org/donate
and donate $26 in support
of the 1 in 26 Americans
who will develop epilepsy in
their lifetime.
Rap.
Create an original rap video
challenging your friends
to help raise awareness
for epilepsy. Visit www.
efwp.org/RapChallenge to
download the background
beat used in the “How We
Do It” video, get ideas for
lyrics you can use in your
own rap, and find “I rap for
one” signs that you can
print and use as part of
your video.
Repeat.
Don’t forget to call out your
friends to become part of
the #EpilepsyRapChallenge!
We encourage you to
challenge at least three
people by name as part of
your video.
Every year the King of Mardi Gras plans a grand entrance, and this year
Mr. Malone decided to call on some of his friends to perform in an epic
rap video to raise awareness for epilepsy. “How We Do It” is an anthem
dedicated to the collective character of Pittsburgh’s uniquely strong and
diverse population. The video features many CEOs and local celebrities,
including Carrie “DJ CC” Coghill of Coghill Investment Strategies, Art
“Grandmaster” Rooney II of the Pittsburgh Steelers, Sy “I Don’t Rap” Holzer
of PNC Bank, Leo “LG Smooth” Gerard of USW, John “J Money” Matlak of
Dollar Bank, Peggy “Peggy B” Beem-Jelley of the EFWCP, and even Super
Bowl Champion Brett Keisel.
After the Mardi Gras Gala, the “How We Do It”
video was posted online. Local television stations
WPXI, KDKA, and WTAE did stories about the
video and local radio stations, including 96.1 KISS
FM and 105.9 The X, highlighted the involvement
of Art Rooney II and Brett Keisel in raising
awareness for epilepsy. Before long, the video
had over 50,000 views. While waiting to film a
television interview about the success of the
video, David Malone suggested we call on our
Scan this QR Code to
community to get involved by issuing the
watch the “How We Do It”
#EpilepsyRapChallenge!
rap video.
Download the profile picture (on
right) at www.efwp.org/RapChallenge
to help spread the word about the
#EpilepsyRapChallenge!
Spring/Summer 2015 Newsletter
•
www.efwp.org
page 7
Do you WALK FOR ONE?
The EFWCP will be involved in 4 walks this summer. Please come out to join us at one or more of these awesome
events or sign up as a virtual walker to help us raise funds and awareness!
Pittsburgh Family Fun Run/Walk for
Epilepsy
When: Saturday, July 25
Where: PNC Park, Pittsburgh
Over 1,500 people are expected to gather at PNC
Park this summer for the 27th Annual Pittsburgh
Family Fun Run/Walk for Epilepsy. Participants
will run a 5K course or enjoy a leisurely 2 mile stroll
along the scenic North Shore Trail. At the end of the
course, teams will meet up on the Roberto Clemente
bridge for a one-of-a-kind tailgate party!
Highmark Walks for a Healthy
Community
When: Saturday, May 30
To register for the run/walk, visit
www.epilepsyrunwalk.kintera.org.
Where: Central Park, Johnstown
When: Saturday, June 6
Where: Presque Isle State Park, Erie
This year the EFWCP will be one of 18 organizations
participating in the Highmark Walk for a
Healthy Community in Johnstown and one of 23
organizations participating in Erie. Highmark
Inc. underwrites the cost of the walk so that 100
percent of the money raised by walkers goes to the
participating organization. Walk in support of the
EFWCP and join us for a tailgate party immediately
following the walk!
To register for the walk, visit
www.walkforahealthycommunity.org.
Harrisburg Senators Family Fun Run/
Walk for Epilepsy
When: Saturday, August 15
Did you know?
If you participate in any of the four run/walk
events that the EFWCP is involved in, you are
eligible to win prizes based on the fundraising
you do in support of people living with epilepsy.
Don’t forget to check back later this spring on
our website at www.efwp.org or our Facebook
page at www.facebook.com/efwcp for the
official announcement of this year’s prizes!
page 8
Where: City Island, Harrisburg
This summer, the 13th Annual Harrisburg Senators
Family Fun Run/Walk for Epilepsy will be held
on City Island in Harrisburg. Participants will
enjoy a 5K run or 2 mile walk course around the
island, followed by a tailgate party in the Carousel
Pavilion. This event is hosted by the EFWCP and
the Harrisburg Senators.
To register for the run/walk, visit
www.epilepsyrunwalk.kintera.org.
Epilepsy Foundation Western/Central Pennsylvania
Westmoreland Sports Dinner and Auction
This lively event is chaired by Dr.
Lou and Diana Catalano. It has been
held annually for the past 19 years
in Westmoreland County. While
most guests come to the event in
hopes of snagging a one-of-a-kind
auction item, others look forward
to dressing for the theme of the
event which changes every year.
This year, the theme was countrywestern, so big hats, boots and
spurs were all the rage!
There was something for everyone
to enjoy. Auction items ranged
from weekend getaways and
autographed sports memorabilia to
jewelry and baskets of chocolate.
There were fabulous raffle items up
for grabs in addition to the live and
silent auction.
Over $40,000 was raised for the
2014 event.
Dr. Lou Catalano is flanked by his dedicated staff members Kathy Morris, Cathy
Tofani, and Terri Shawley.
Legislative Advocacy
Advocacy Day in Harrisburg
Epilepsy advocates will have an opportunity to persuade the General
Assembly to restore the state funding at an advocacy day in the state
capitol on Tuesday, May 5, 2015.
Parents, families and individuals affected by seizures from all across the
state will gather in the East Rotunda of the Capitol Building for a legislative
breakfast. Advocates will have a chance to share their story with members
of the Pennsylvania House of Representatives and Senate and to talk about
how seizures impact their daily lives.
If you or your family are interested in participating in this event, please
contact the EFWCP at [email protected] or call 800-361-5885.
Medical Marijuana Update
State Legislation: Sens. Mike Folmer, R-Lebanon, and Daylin Leach,
D-Montgomery, have again introduced legislation that could make medical
marijuana legal in PA. SB 3 has support from Senate leaders and could
pass quickly in the Senate this year. The new bill would create oversight
of medical cannabis, charge fees for licenses for growers, processors,
dispensers and patients.
The legislation prohibits smoking medical marijuana and using marijuana
while driving or operating heavy machinery.
While the Senate seems ready to support the measure, House members
say that SB 3 could face another uphill battle in the state House of
Representatives.
Federal Legislation: On March 10, 2015, Senators Cory Booker (NJ), Rand
Paul (KY), and Kirsten Gillibrand (NY) introduced the Compassionate
Access, Research Expansion and Respect States (CARERS) Act (S. 683),
which would move cannabis to Schedule II, protect individuals in states
with medical cannabis programs, and facilitate research on cannabis and
cannabidiol. Learn more at epilepsy.com/cannabis.
Spring/Summer 2015 Newsletter
•
www.efwp.org
State Funding for Epilepsy
in Jeopardy
Governor Tom Wolf introduced his
first state budget proposal for next
year and it does not include funding
for epilepsy support services within
the Department of Health budget.
Currently, the state budget provides
a total of $550,000, statewide,
for epilepsy programs. Loss of
this funding would be devastating
for epilepsy programs across
Pennsylvania. Now is the time to
contact your State Legislators to
ask them to restore funding for
epilepsy services.
State funds support the following
activities within the EFWCP
territory:
• Regional offices in Johnstown and
the Capitol Region
• Education and Training for School
Personnel (Project School Alert)
• Education and Training for First
Responders
• Community Based Education
for Patients/Workshops and
Conferences
• Information and Referral Services
• Program Staff in all three EFWCP
Offices
page 9
Upcoming Events
April 2
Gettysburg Support Group
First Thursday of every even
numbered month
Gettysburg
April 7
Hershey Support Group
Meeting
First Tuesday of each month
Hershey
April 7
Johnstown Team Captain
Party
Boulevard Grill, Johnstown
April 9
Studio E: The Epilepsy Art
Therapy Program
Teen Session
Thursdays for 8 weeks
Pittsburgh
April 11
National Walk for Epilepsy
Washington D.C.
April 12-14
Public Policy Institute/
Teens Speak Up! Program
Washington D.C.
April 25
Parent Education Workshop
York
April 25
Parent Education Workshop
Pittsburgh
May TBD
2nd Annual Epilepsy MiniConference
Hershey
May TBD
Teen Social Event
Harrisburg
page 10
May 2
School Nurse Education
Workshop
June 4
Pennsylvania State Police
Health Fair
May 5
Legislative Breakfast/
Advocacy Day
June 6
Highmark Walk for a
Healthy Community
May 7
York Support Group
June 21-27
Camp Frog
Johnstown
Harrisburg
Harrisburg
Erie
First Thursday of every odd
numbered month
Camp Conrad Weiser,
Wernersville
York
May 16
Parent Education Workshop
July 5-11
Camp Frog
Erie
Camp Fitch,
North Springfield
May 16
School Nurse Education
Program
July 25
Pittsburgh Family Fun Run/
Walk for Epilepsy
Camp Hill
May 23
Epilepsy Group for Parents
Harrisburg
May 30
Highmark Walk for a
Healthy Community
Johnstown
June TBD
Oscar Project families
introduced to their canine
companions
June TBD
Physician Education Event
Allegheny General Hospital,
Pittsburgh
June TBD
Camp Frog Pizza Parties
Harrisburg & Pittsburgh
PNC Park,
Pittsburgh
August TBD
Gateway Clipper Adult
Social
Pittsburgh
August 15
Harrisburg Senators Family
Fun Run/Walk for Epilepsy
Metro Bank Park,
Harrisburg
September 19
Pittsburgh Family Picnic
Schenley Park,
Pittsburgh
December 5
Pittsburgh Holiday Party
Sokol Club,
Pittsburgh
Epilepsy Foundation Western/Central Pennsylvania
The Back Page News
The Food and Drug Administration
(FDA) has issued several warning
letters to companies that have
inappropriately marketed products
containing cannabidiol (CBD).
Many of these companies have
misrepresented the current science
on CBD and all of the products
contain little to no CBD. You can
view the list of companies that
were issued warnings at http://tiny.
cc/CBDwarning or scan this QR
code. These warnings reinforce
the need for safe and
legal medical cannabis
programs in the
states and additional
research and testing on
cannabis products.
The National Walk for Epilepsy
is on Saturday, April 11, 2015
in Washington, DC. If you are
attending, please consider joining
our team. You can
register for the walk,
and join team “Epilepsy
Foundation Western/
Central PA” at http://
tiny.cc/NationalWalk
or scan this QR code.
The J Kiffen Penry Patient
Travel Assistance Fund provides
reimbursement of travel expenses
for eligible patients and their
families who have to travel more
than 50 miles from their home to
receive treatment for their epilepsy/
seizure disorder. This program is
under the direction of the Epilepsy
Foundation national offices in
Washington, D.C. There are strict
eligibility requirements, so please
contact us for an application and
guidelines.
Applications are now being
accepted for the Embrace watch.
The Embrace watch is a smart
watch designed to help people
with epilepsy manage their
seizures. Empatica, the maker of
the Embrace watch, has partnered
with the Epilepsy Foundation to
provide the watch to families that
cannot afford them.
Find complete details
about the program,
and download an
application at http://
tiny.cc/EmbraceWatch
or scan this QR code.
The Public Policy Institute and
Teens Speak Up! advocacy
meetings are being held April 12-14
in Washington, DC. Staff member
Jordan Hinds will be joined by
teen representative Philip Kerber
(pictured above) and his mother
at the event. The teens will learn
how to be effective advocates, and
will have a chance to practice what
they learn by meeting with state
legislators. Philip was selected
to represent the EFWCP after
after assuming a leadership role
in a focus group to develop a new
educational epilepsy program for
middle school students. In addition
to being part of a video for that new
program, Philip is also featured in
the 2014 Annual Giving Video that
was released last year.
Families got a chance to socialize over lunch at the Harrisburg Holiday party.
The University of Pittsburgh at Johnstown
Psychology Club created this display for
National Epilepsy Awareness Month!
Spring/Summer 2015 Newsletter
•
The first International Epilepsy Day was observed on February 9th, 2015.
www.efwp.org
page 11
1501 Reedsdale Street, Suite 3002
Pittsburgh, PA 15233
The EFWCP is proud of the support
we offer to people with seizures
and their families. More than 55%
of our funding comes from our
supporters, people just like you.
Please consider making a donation
to the Epilepsy Foundation
Western/Central PA to help us to
continue to provide quality services.
How to donate:
• Use the enclosed envelope to
mail a donation
• Donate online at
www.efwp.org/donate
• Donate through workplace
giving:
o Pennsylvania State
Employees Combined Appeal
(SECA): 2000-001
o Combined Federal Campaign
(CFC): 99707
o United Way – ask your
campaign manager for our
donor number (United Way
of Southwestern PA uses
number 288)
page 12
Epilepsy Foundation Western/Central Pennsylvania