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In this issue
- How to Make Epilepsy Awareness Month a success
- November Conferences
- November 2009 Support Groups
- Awareness and Advocacy
- Research
- Unique Ways to Donate
- Donate Today!
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 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.
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Unique Ways to Donate
Now more then ever there are many different ways to can donate to the EFEPA just through places that you shop. Take a look below and help support the Foundation.
www.escrip.com -Visit www.escrip.com and you can donate 10% of your Genuardi purchases to EFEPA #150540676. Sign up – it’s quick – it’s easy – it’s free. There are also many other stores you can choose from.
www.iGive.com-Is an easy way to raise money for the EFEPA every time you shop online or search the web. iGive.com has over 700 online stores including amazon.com, eBay, Barnes & Noble, and more. Every purchase you make through iGive.com automatically benefits Epilepsy Foundation Eastern Pennsylvania. Make your first purchase within 45 days to receive a $5 bonus donation for your cause!
www.recyclebank.com- RecycleBank partners with cities and haulers to reward households for recycling. Households earn RecycleBank Points. Donate your RecycleBank Points for cash to benefit the Epilepsy Foundation Eastern PA. To register go to the Get Rewards tab, search in your area and scroll down to E, click on Epilepsy Foundation Eastern PA, and follow the instructions to complete your donation – currently for every 1025 RecycleBank Points you can donate $10.
United Way- Many businesses partner with United Way as a way to help the community and local non-profits. Ask your employer if they are part of United Way and start donating directly to the Epilepsy Foundation Eastern PA, Donor Choice #00541.
www.efepa.org/donations- To donate directly to the EFEPA.
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Watch For It!
The following message will be displayed on the PECO building’s Crown Lights on Nov. 1-3:
"November Epilepsy Awareness Month. For Info 800 887-7165. Let’s Talk About It!"
If you catch it please take a picture and email it to amccartin@efepa.org.
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Epilepsy Foundation Eastern PA
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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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November is
Epilepsy Awareness Month
10 Things you can do to make Epilepsy Awareness Month a success:
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Host a Talk About it @ Dinner
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Attend a conference
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Participate in a support group meeting
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Volunteer & meet the EFEPA staff
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Become an advocate
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Help EFEPA remain vital by donating
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Talk About It!
It's not too late to sign up for our November Conferences!!
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, with keynote speaker Tony Coelho, former Representative, 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.
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.
Join Our Support Groups
- Hazelton-November 11th, (570) 592-1150, epilepsywv@efepa.org
- Lancaster-November 18th, (800) 887-7165 x104, kmichnya@efepa.org
- Lehigh Valley-November 5th, (215) 629-5003 x109, lv@efepa.org
- Scranton- November 18th, (570) 357-9051, epilpesywv@efepa.org
- Wilkes-Barre-November 18th, (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
Thank You to You!
The EFEPA would like to thank everyone who supported the Foundation by calling their representatives during the State budget impasse. With your help the Epilepsy Foundations of Pennsylvania were included in the budget and will continue to receive funding for another year. Though the funding is lower than past years, we are extremely happy we are still in the budget. Thank you again for your help over the past months and remember to thank your representatives that support epilepsy services in Pennsylvania.
60 Minutes Segment
On Sunday, October 25, 60 Minutes featured an in-depth examination of the problems and challenges of epilepsy/ seizure disorder. Hosted by Katie Couric, she discusses epilepsy/seizure disorder with Susan Axelrod, founder of Citizens United for Research in Epilepsy (CURE). To watch the segment click here.
While Susan is fighting for a cure on the national stage, we have local scientists working in our region to further our understanding about epilepsy. In order to prevent, treat and cure the disorder, we need to know how it develops. The Epilepsy Foundation provided grants to Pennsylvania State University, the University of Pennsylvania and Children’s Hospital of Philadelphia. Further research funding came from the National Institute of Health and the CDC to such institutions as Drexel, Temple, University of Pennsylvania, Children’s Hospital of Philadelphia, and Thomas Jefferson University. A grand total of over $10 million is being utilized for researching for a cure in our area. To learn about more research going on throughout the country click here.
ATTENTION: 18-29 year olds with seizure disorder
The Foundation is planning a Young Adult Retreat, in the Spring of 2010, in Bucks County. Accommodations will be in a dormitory-style facility and activities would be age appropriate along with informational sessions.
We are in the planning stages and are seeking feedback and suggestions from those who may be interested in attending the full session or individual workshops and activities. There may be opportunities for siblings and parents to attend individual day informational sessions. We are also seeking Mentors.
Please contact the Foundation today with your interest, ideas and suggestions. efepa@efepa.org or (215) 629-5003, x100 or fax (215) 629-4997.
Research
H1N1/Swine Flu and Epilepsy
The EFEPA has received a couple phone calls from constituents about whether or not they should get the H1N1 vaccine. Dr Brenda Porter, a neurologist from CHOP said this:
" It appears that in many ways the H1N1 is acting similar to the typical seasonal winter flu. However there may be less overall immunity in the community as it does not look similar enough to seasonal flu that people have immunity. This means there is less herd immunity. The recommendation from the CDC for both the seasonal and H1N1 strongly suggest that anyone with a chronic neurologic disease like epilepsy get both vaccines. I am recommending it to all my patients that can find the H1N1 vaccine to get the shot."
For more information on H1N1 and epilepsy please visit here.
ALWAYS check with your personal physician for what is recommended for you and your specific medical conditions.
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