April 2012 E-Newsletter

Visit our site April 2012
Calling All Epilepsy Advocates!

If Someone You Love Has Epilepsy or Seizures…

Contact PA Governor Corbett and your elected officials today!

The upcoming month is critical to reinstating the state funding for epilepsy services and it depends on you! Do not rely on your neighbor to speak up; we need your held to express your concerns to each of your legislators and Governor Corbett. Click here to find out who your legislators are.

Governor Corbett’s budget eliminated all funding for epilepsy services! Governor Corbett, his staff and your legislators need to hear from individuals and families affected by epilepsy that the EFEPA’s services are vital to your family. If the elected officials don’t hear from all of us that epilepsy services are important, there is no chance that the funds will be reinstated.

Please use this template to send to your elected officials or write your own personal story about epilepsy and the impact the Foundation has had on you.

Along with writing or calling, we encourage you to join the Epilepsy Foundations of Pennsylvania at our annual Legislative Breakfast in Harrisburg on Tuesday, May 8, 2012 from 7:30am – 9am at the East Wing Captial Complex. Each year, we educate elected officials about the epilepsy education programs and services supported by the PA General Assembly. Please RSVP to efepa@efepa.org.

Save the Date for Upcoming Events, Conferences and Programs
Conferences and Programs

Lehigh Valley Health Network – THIS SATURDAY, April 28 – 8 am – 1 pm – Lehigh Valley Epilepsy Education Exchange

Epilepsy experts from the Lehigh Valley area and Philadelphia discuss a range of topics including, the basics of epilepsy and the cognitive effects of epilepsy. There will be two tracks, one concentrating on children and epilepsy and the other specifically for adults and epilepsy. To view the agenda and list of speakers, click here. To register, visit www.lehighvalley.kintera.org.

Lancaster Farm & Home Center – Wednesday, May 16 – 6 pm – 8 pm – Epilepsy & Research: A Focus on the Future

The EFEPA is pleased to announce their fourth annual conference in the Lancaster area. This evening conference welcomes Dr. Brian Litt of the University of Pennsylvania School of Medicine and Penn Engineering Program, who will provide the most current information about epilepsy/seizure disorder, research and future treatment options for people affected by seizures. To view the flyer for the conference, click here.To register, visit www.lancastercounty.kintera.org.

Webinars

Non-Epileptic Seizures Live Q & A Webinar for Parents – Thursday, April 26 – 1 – 2 pm

Learn more about non-epileptic seizures (NES) through this free webinar by the home office of the Epilepsy Foundation. This two-part webinar is designed specifically for parents with children with epilepsy. Dr. Miya Asato of the Children’s Hospital of Pittsburgh, Dr. Rochelle Caplan of UCLA Semel Institute for Neuroscience & Human Behavior and Julia Doss, PsyD. of the Minnesota Epilepsy Group will discuss NES and be available for questions and answers. For more information or to register, click here.

Events

Saturday, May 12 – 5:30 pm – Phillies Fundraiser -Citizens Bank Park

The Philadelphia – Main Line Alumnae Club of Pi Beta Phi is holding their annual Phillies game to benefit Camp Achieve. Join them on May 12th as they watch the Phillies take on the San Diego Padres. There will be a pre-game tailgate at 5:30 and the game begins at 7:05 pm. Tickets are $80 per person and include the pre-game tailgate. For more information and to learn how to to purchase tickets, click here. If you have any questions, please contact Madeline Bergman at development@efepa.org.

Saturday, June 16- 8:00 am – Summer Stroll 2012 – Forbidden Drive in Chestnut Hill

Come join over 800 walkers as they stroll along Forbidden Drive, raising money and awareness of epilepsy. One of the Foundation’s largest events, Summer Stroll features a 5 mile walk in beautiful Fairmont Park and a picnic filled with food, games and fun. It is the perfect time for you to come and meet other members of the EFEPA family and network. For more information and to register visit: www.strollforepilepsypa.kintera.org.

Sunday, August 19 – August 24th – Camp Achieve 2012  – Camp Green Lane – Green Lane, PA 

Children and Teens, ages 8-17 with a primary diagnosis of epilepsy are invited to apply to attend Camp Achieve, a week-long overnight camp in Green Lane, PA. Camp Achieve, staffed with nurses and neurologists, is the perfect place for your child or teen to swim, canoe and participate in fun activities while being educated and meeting others with a similar diagnosis. Camp Applications will be available by mid-May. If you have any questions about camp, please visit our website, or email or call Sue Livingston, Camp Director, at slivingston@efepa.org or 215-629-5003 x102.

For the latest epilepsy news and information about the Foundation,
please like us on Facebook!

Managing Students with Seizures in the Classroom
EFEPA provides a program with a curriculum designed especially for school nurses. Managing Students with Seizures is a program that includes seizure recognition and first aid, classification, treatment options and classroom management of seizures. It is free of charge and is approved for continuing education credits (ACT 48).

Project School Alert

The school year is coming to an end and if your child or teen has or needs any special accommodations, plans should be made, or revisited now, for the 2012-13 school year.

If your child has an IEP (Independent Education Plan), to assist in the formation and implementation of a plan to address his/her learning needs, or a 504 plan to evaluate their need for classroom accommodations, EFEPA can offer assistance in addressing any needs related to epilepsy/seizure disorder. This applies for grades K – 12 as well as 3 to 5 year olds. EFEPA’s Project School Alert, offered free of charge for  schools and daycares, can be requested by parents, nurses, teachers or school administrators.

Project School Alert also offers in-services to teachers and school staff as well as programs for students grades K-12.  All programs are offered free of charge.

For information on Managing Students with Seizures and Project School Alert, contact Sue Livingston at slivingston@efepa.org or call 215-629-5003×102.

Support Group Information
Berks CountyNEW

Location: Reading Hospital & Medical Center

Upcoming Dates: June 14 (meetings start at 6:30 pm)

Bucks County

Location: St. Mary Medical Center

Upcoming Dates: May 3, June 7 (meetings start at 6:30 pm)

Delaware County

Location: Riddle Hospital

Upcoming Dates: May 16, June 20 (meetings start at 6:30 pm)

Hazelton

Location: General Hospital

Upcoming Dates: May 9, June 13 (meetings start at 7 pm)

Lancaster

Location: Lancaster General Hospital

Upcoming Dates: April 25. June 27 (meetings start at 6 pm)

**April’s meeting will be at Lancaster Country Day School and feature a performance by Donegal HS Rhythm Singers. Food will also be provided.

Lehigh Valley

Location: Lehigh Valley Hospital Upcoming Dates: May 10, June 14 (meetings start at 6 pm)

Philadelphia

Location: JFK Community MH/MR Center

Upcoming Dates: May 15, June 19(meetings start at 6 pm)

Scranton

Location: CMC Professional Bldg.

Upcoming Dates: May 16, June 20 (meetings start at 7 pm)

Wilkes- Barre

Location: John Heinz Institute Upcoming Dates: May 23, June 27 (meetings start at 7 pm)

For more information on Support Groups, please click here.
Kids Speak Up
Camp Achieve camper and Souderton High School student, Seamus Hanrahan represented the EFEPA at the annual National Epilepsy Foundation’s Kid Speak Up Conference held in Washington, DC. Seamus and his mother, Beverly met with legislators to dicuss the need of continuous funding for epilepsy research through the NIH and the CDC. As well as the passing of the RAISE Resolution. For more information on the topics dicussed, click here. Thanks to Seamus for sharing your story and representing the Foundation!
National Walk for Epilepsy
A big thank you to our supporters who traveled to Washington, DC to attend the National Walk for Epilepsy on Saturday, March 31st. Thousands, from around the country, walked along the National Mall to raise awareness of epilepsy. Participants who joined the Epilepsy Foundation Eastern PA fundraised for services in our area. The EFEPA was also the second largest affliate team at the Walk! Thanks for all your hard work and traveling to DC!
IronMan Participant to Raise Money for Camp Achieve
Mark Ashby, a former Marine, from Doylestown, PA, is an inspiring man to most, as he is about to participate in his 6th IronMan Triathlon on May 19th. An IronMan competition consists of a 2.4-mile swim, then a 112-mile bike ride, and finally, a marathon (26.2 miles).   What makes him stand out even more than other participants is that he’s been living with epilepsy for over 30 years.

Mark Ashby is a great influence to the 1 in 26 people that will develop epilepsy at some point in their lifetime. Not only because of his determination, but also because of his bravery to stare down traditional barriers to people with epilepsy. Mark’s motto that he lives by is “That you should never say ‘no’ to anything unless you try, and if you have the spirit to try, you should have the power to succeed.”

For the upcoming IronMan Triathlon, Mark is fundraising to benefit the EFEPA’s Camp Achieve.  To donate, please click here. You can learn more about Mark’s story by visiting here.

Epilepsy Foundation Eastern Pennsylvania 919 Walnut Street, Suite 700 Philadelphia, PA 19107

Phone: 215-629-5003  |  Fax: 215-629-4997 |  Email: efepa@efepa.org

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© 2011 Epilepsy Foundation Eastern Pennsylvania

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