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In this issue
- Talk About it @ Dinner
- October 2009 Support Groups
- Awareness and Advocacy
- Research
- Donate Today!
Epilepsy on the Web
The EFEPA is always coming across new links and websites that we would love to share with you. Below is a list of websites that you should check out. You can also become a fan of the Epilepsy Foundation Eastern PA on facebook where we post links and websites that are of interest more frequently.
SeizureTracker.com - Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily shared and manipulated by caregivers.
www.goeyc.org -EYC is the spot for young people with Epilepsy. This website is run by the Epilepsy Foundation National Youth Council. It is targeted for young people with epilepsy to learn about living with epilepsy, meeting other people like themselves, and generally have a place to talk, share stories, and hang out with other people affected by epilepsy. Users can also play games, watch videos and more!
Art and Epilepy-Cathy Hozack found one unique way to treat her unpredictable epilepsy -- painting. She sooths her soul and mind. Visit the link above to watch an interview of her on NBC10. To see more of Cathy's art go to www.cathyhozack.com.
Learning Disabilities and Epilepsy-Children newly diagnosed with epilepsy may not show signs of academic problems early on, but a new study suggests they could benefit from early cognitive testing to spot potential learning disabilities before they surface in school.
Learn about EFEPA’s Project School Alert (PSA) program. PSA offers:
- School in-services facilitated by EFEPA staff for teachers and school nurses
- Age appropriate classroom presentations for grades K-12 to build understanding and sensitivity about epilepsy
- Assistance with Individualized Education Programs (IEP) and school issues and concerns
For more information, contact Sue Livingston, Education Coordinator, slivingston@efepa.org
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CAMP ACHIEVE 2009
Camp Achieve concluded on August 28th and the rave reviews are still coming in. The Foundation hosted 45 campers, 10 more than previous years, at Camp Green Lane. Campers, counselors, and staff enjoyed a fun week of entertainment, sports, arts-n-crafts and games. Some of the highlights were a tennis and golf clinic, the climbing wall, and a surprise visit by the Philadelphia Phanatic!!! The campers baked their own personal pies with their counselors, canoed, swam, and created arts and crafts masterpieces to bring home.
New this year was a Fiesta where authentic music was played while the campers danced. Sombreros, chili pepper beads and fiesta goodie bags were provided for each camper. A conga line even made it through the group of campers and counselors. Crafts, bubbles, tattoos and a barbeque topped off the evening.
The annual talent show was once again a great hit and the talents were endless! Fantastic support was shown for each and every one that participated. Campers sung, read poetry, danced, played instruments and even did impersonations of their favorite camp counselors. All in good humor, of course.
Even with all the fun campers were able to get serious when nurses and neurologists spent time discussing their concerns and feelings about epilepsy. We were even able to incorporate epilepsy facts into our bingo game! And as the week progressed, campers shared experiences and information, gained independence, self esteem, and friendships which are the real blessings of Camp Achieve.
Didn't come to camp this year? Check out the pictures here to see what you've missed.
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SAVE THE DATE
Mardi Gras Gala February 16, 2010 ____________________________
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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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It's time to start planning for November's Epilepsy Awareness Month
This month's e-news focuses on things you can do to help support the EFEPA and to raise awareness during next months, Epilepsy Awareness Month.
Talk About it @ Dinner
Talk About it @ Dinner is a new nationwide fundraiser for the Epilepsy Foundation. Friends of the Epilepsy Foundation Eastern PA like you can join supporters of the other Epilepsy Foundation affiliates across the country to host a dinner in your home to increase awareness about epilepsy and raise money in support of the Epilepsy Foundation’s mission.
Talk About it @ Dinner is an exciting way for your friends to turn a party in your home into an instant fund-raiser at the same time your guests learn about epilepsy and the work of the Foundation. Your dinner can be as simple as hamburgers or hotdogs on the grill or as elaborate as you like. To make your work even easier, you will receive a personal host kit which includes sample invitations and information about the Epilepsy Foundation Eastern PA. Become a part of this national movement and join us to Talk About It. Sign up now by contacting Julia Greenberger at 215.629.5003 x107 or jgreenberger@efepa.org.
Join Our Support Groups
- Hazelton-October 14th, (570) 592-1150, epilepsywv@efepa.org
- Lancaster-October 21st, (800) 887-7165 x104, kmichnya@efepa.org
- Philadelphia-October 27th, (215) 629-5003 x103, adultservices@efepa.org
- Scranton-October 21st, (570) 357-9051, epilpesywv@efepa.org
- Wilkes-Barre-October 28th, (570) 830-2039, epilepsywv@efepa.org
For more information on each support group please call the numbers provided and visit the EFEPA's support groups page for other dates. RSVP is requested one week before the date of each meeting.
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Awareness and Advocacy
Epilepsy Education & Information Exchange "Let's Talk About It"
The EFEPA's annual conference will be held on on Saturday, November 7, 2009 at the DoubleTree Guest Suites Philadelphia West in Plymouth Meeting. This half day educational conference will kick off November as Epilepsy Awareness Month and target those living with epilepsy, family and loved ones of those living with seizures, medical and healthcare professionals, and school personnel.
State Representative Joshua Shapiro, D-Montgomery, will open the conference with remarks and a welcome. The keynote address entitled “Let’s Talk About It”, will be presented by Tony Coelho, former member of the U.S. House of Representatives. Mr. Coelho, who has epilepsy, was the primary author of the Americans for Disabilities Act, widely recognized as the most important piece of civil rights legislation in the past 30 years. As a former congressman, Mr. Coelho has become an advocate for those with disabilities and for patient rights.
Registration and Continental Breakfast will begin at 8:30am. Workshops include a range of topics such as: Seizure Types and Treatments: Brands vs. Generics; How to Get Answers and find Resources; Lifestyle Modifications: Compliance, Seizure Triggers and Limitations; Empowering Families; and Maximizing a Child’s Strengths. Furthermore, we will offer a separate interactive workshop for adults ages 18-29, titled “This is YOUR Life!”. The faculty will feature local and national experts in epilepsy from the leading epilepsy centers in the region.
For more information, or to register, call (215) 629-5003, ext. 102 or (800) 887-7165, ext. 102 (PA Only) or email efepa@efepa.org .
You Are Not Alone Conference
Saturday, November 21st will be the annual "You are not alone" conference at Lehigh Valley Hospital, in Allentown, PA. Registration begins at 8:00am and goes to 1:00pm. Topics include: the diagnosis of epilepsy through the continuum of life, managing your epilepsy diagnosis, self advocacy, quality of life and updates on the latest in treatments and research. The speakers include 3 highly respected area neurologists that specialize in epilepsy, a neuropsychiatrist, and an inspirational speaker.
For more information, or to register, call (610) 402-CARE, (610) 737-0613, or email lv@efepa.org.
21st Annual Charley Roach Golf Invitational.
We lucked out with phenomenal weather and fantastic golfers to help celebrate the Golf Invitational's 21st Anniversary, held on September 15th, at RiverCrest Golf Club and Preserve. The annual fundraiser netted $45,000 and all the proceeds will allow the EFEPA to carryout the three core principles of our mission – education, advocacy and support.
We owe a huge part of the success to the Roach family and their friends who have supported the EFEPA for over 30 years. The accomplishments of the Foundation throughout the years could not have happened without their dedication to the cause of epilepsy.
Research
Sabril Approved by FDA to Treat Spasms in Infants and Epileptic Seizures
Sabril (vigabatrin) oral solution has been approved by the Food and Drug Administration to treat infantile spasms in children ages 1 month to 2 years. Sabril is the first drug in the United States approved to treat the disorder, characterized by a severe type of seizure that usually appears in the first year of life, typically between ages 4 months and 8 months. The disorder can be debilitating because of the frequency of difficult-to-control daily seizures.
Sabril (vigabatrin) tablets have been approved for adult use in combination with other medications to treat complex partial seizures that have not responded adequately to previous drug therapies. Read more by clicking here.
Exposure to Antiepileptic Drugs in Pregnancy Not as Serious as Initially Reported
Recent study results published in the latest issue of Epilepsia point to increased risk of adverse pregnancy and birth outcomes for women with epilepsy. However, Epilepsy Foundation Professional Advisory Board Chair and Director of Research for the Epilepsy Division of the Department of Neurology at Brigham and Women’s Hospital, Page Pennell, M.D., found much in the study that was actually reassuring for women with epilepsy... Read the rest of the article on the Epilepsy Foundation of America's website by clicking here
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Epilepsy Foundation Eastern Pennsylvania
