In this issue

• Legislative Breakfast and Budget Meeting
• June 2009 Support Groups
• Awareness and Advocacy
• Research
• Update from the Epilepsy Foundation of America

Upcoming Events

Summer Stroll 2009, on June 20th, is only a couple weeks away.  This is the EFEPA's largest fundraising event and we still need your help reaching our goal.  Register today at www.strollforepilepsypa.kintera.org. You can also help by donating your status on facebook and twitter to the Stroll to help get the word out.  We are also looking for volunteers to help out on the day of the Stroll.  If you are interested in volunteering please contact Alli at (215) 629-5003 x105 or amccartin@efepa.org. 

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 June 20, 2009

www.strollforepilepsypa.kintera.org

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Eat Out for Epilepsy.  Come join the Kaercher family and the Stroll Team "Walk with Grace" at the Friendly's Restaurant in Pottstown on Monday, June 8th from 4pm-10pm. A portion of the proceeds made that night will benefit the Epilepsy Foundation. The Kaercher Family not only wants to raise money for the Foundation, but educate the public about epilepsy/seizure disorder. Come support their dedication to the cause and enjoy dinner as a proud member of the epilepsy community.

Friendly’s Restaurant, 200 Shoemaker Rd. (Shoemaker Rd and Route 100), Pottstown, PA 19464  or call 610-705-4404 for more information.

Join the Philadelphia Support Group meeting on June 23, 6:00 pm at the JFK MH/MR building on the 2nd floor. The expected topic to be addressed that evening will be Nutrition and Food Regimens and specifically, how they apply to people with epilepsy. A Nutritionist may be speaking to the group, as well as several members.

Register Today! Camp Achieve 2009 Aug 23-28, 2009 For Kids 8-17 Camp Achieve is an overnight camp specially designed to meet the needs of children and youth with a primary diagnosis of epilepsy/seizure disorder. Camp Achieve provides a unique opportunity for campers to meet others who are living with the same challenges. Camp activities are designed to increase self esteem, independence, enhance personal growth, build friendships, and create unforgettable memories. A fun, secure, safe, and healthy environment is ensured by our EFEPA staff, Camp Green Lane counselors, medical professionals, and trained volunteers. We are still accepting applications for campers, counselors, and medical personnel. If you are interested in applying, please contact Jean at  (215)629-5003 x110 or email camp@efepa.org.

21st Annual Charley Roach Golf Invitational.  Join the EFEPA on September 15th, 2009 at RiverCrest Golf Club in Pheonixville PA for our annual golf outing to benefit the EFEPA.  Learn more at www.golfforepilepsypa.kintera.org.

In-Kind Donations

In-kind donations are needed for Summer Stroll, the Golf Invitational, Camp Achieve and Mardi Gras.  The Foundation is looking for gift certificates to restaurants, spas, stores, hotel stays, sports memorabilia, tickets to sporting events, shows, and theme parks, vacation rentals. The Foundation utilizes the in-kind donations for a silent auction, for fundraising prizes and for their dedicated volunteers.  

If you are not sure what you have is appropriate call Julia at (215) 629-5003 x107.

 

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Donate!

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Epilepsy Foundation Eastern PA

919 Walnut St. - Suite 700

Philadelphia, PA 19107

215.629.5003x100

www.efepa.org

efepa@efepa.org

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See what's going on the at the Epilepsy Foundation Eastern PA in June

We need your help now more than ever.  In order to make this statewide legislative breakfast and budget briefing a success, we need volunteers who are able and willing to attend the breakfast with us.  We would also appreciate your time to help staff our information table at the Capital from 10am-3pm. Any time you could give us would be beneficial. 

The best and only way to be sure that members of the House & Senate will stop by to learn more about the potentially devastating impact of the proposed elimination of state funding for epilepsy services is to have you, as their constituents, invite them to this event.  If you can attend the event, we encourage you to call your legislators and invite them to be there. You will get to talk with them that morning and ask them for their support.

If you are planning to attend this event, please let us know by contacting Peggy Beem-Jelley at 1-800-361-5885 or at pbeem@efwp.org.  With your help, we can and will save state funding for community epilepsy programs.

Thank you for your passionate voices on behalf of those affected by seizures.

Awareness and Advocacy

Today Show Covers Medication Switching

Last week, the Today Show researched the topic of Medication Switching and carried a six minute segment featuring a patient story and comments from Dr. Jackie French from NYU, formerly of University of Pennsylvania.  This is incredible national attention to this issue of brand and generic substitution. Please click the link below to watch the segment. Click Here for Video 

Expressions of Courage Art Contest  

Art can provide an escape from the day-to-day experiences of living with any disease or illness, and may be a way for people to express how they feel about hope, strength, courage and freedom. Now, people with epilepsy can show their creative talents by participating in the 2009 Expressions of Courage Art Contest. Call the Foundation or email the EFEPA for a registration form or visit here.

Due Date: August 28, 2009

 

Linda Kearns, from Coatesville, PA, 2008 winning entry

Research

Study to link genetics to epilepsy.  A 5-year research study conducted by the National Institutes of Neurological Disorders and Stroke is looking for links between certain genetic variants and some forms of epilepsy.

The Epilepsy Phenome/Genome Project (EPGP) is the first and largest research study of its kind to understand what causes epilepsy, why people respond differently to medications, and why some families have several people with seizures.  The goal of EPGP is to collect, anonymously, a blood sample and detailed clinical information on people with specific types of epilepsy, in order to improve the diagnosis and treatment of epilepsy for many people living with seizures.  

The Study is looking for participants who:

• Have epilepsy with no known cause and who also have a brother or sister with epilepsy, or
• Have seizures due to infantile spasms, Lennox-Gastaut Syndrome, Polymicrogyria, or Periventricular Heterotopia. (No sibling required, but both parents must also agree to participate)

More information can be found at www.epgp.org or email info@epgp.org or call 888.279.EPGP

Update From Epilepsy Foundation of America 

• The May meeting of the EFEPA’s Board of Directors hosted a visit from Eric Hargis, CEO of the Epilepsy Foundation of America.  Eric’s keynote focused on the vision of national leadership and the affiliate role.  In addition Mr. Hargis presented an EFA media update highlighting the many recent epilepsy news stories – http://www.epilepsyfoundation.org/newsroom/news.cfm. 
• eCommunities is a newly launched social network on the National's office website. It gives individuals the opportunity for discussion forums, joining group, finding other people in your area with epilepsy and more.  Make your own profile at http://epilepsyfoundation.ning.com.
• The national office has been working with Greg Grunberg from the hit series “Heroes”.  Greg’s son, Jake, has epilepsy and Greg and his friends have launched a public awareness site about epilepsy/seizure disorder. Visit the website at www.talkaboutit.org.                            .