EFEPA - Epilepsy Foundation Eastern Pennsylvania

April 2012 E-Newsletter

Julia — Tue, 24 Apr 2012 20:34:31 +0000

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 County – NEW 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 6^th IronMan Triathlon on May 19^th. 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

_____________________________________________________________________________________

Phillies Fundraiser with Pi Beta Phi

Julia — Tue, 24 Apr 2012 15:38:59 +0000

Kids Speak Up! 2012

Julia — Mon, 23 Apr 2012 16:09:29 +0000

Seamus and Beverly Hanrahan at the Capital

On April 1st – April 3rd, the EFEPA participated in the Epilepsy Foundation of America’s annual Kids Speak Up! This program is the centerpiece advocacy initiative with over 250 advocates, including other Epilepsy Foundation affiliate staff, parents, children, doctors and volunteers that come from across the nation to share their story, raise awareness, and discuss the needs of people with epilepsy with members of Congress.

This year Camp Achieve camper and Souderton High School student, Seamus Hanrahan, represented the EFEPA at the annual conference. Seamus along with his mother, Beverly, and EFEPA staff visited local PA legislators to share Seamus’ story, while creating awareness and sharing the Epilepsy Foundation of America’s Message.

We asked our local legislators, including Rep. Charles Dent, Rep. Allyson Schwartz, Rep. Pat Toomey, and Rep. Bob Casey, to support:

The RAISE Resolution, which promotes greater awareness and understanding about epilepsy.
$7.8 million for the CDC Epilepsy program and $3.6 million for the Project Access epilepsy program at HRSA.
$160 million for funding epilepsy research through National Institute of Health (NIH)
MODDERN Cures Act, which would accelerate the development of new diagnostic tools and treatments for epilepsy.

We encourage you to get involved like Seamus and share your story as well as asking your local federal legislators to support the Raise Resolution, funding for CDC, HRSA, and NIH, and the MODDERN Cures Act.

Institute of Medicine’s Report: Epilepsy Across the Spectrum

Julia — Thu, 05 Apr 2012 16:26:17 +0000

Recently, the Institute of Medicine (IOM) released its report, Epilepsy across the Spectrum. The report highlights numerous gaps in the knowledge and management of epilepsy and recommends actions for improving the lives of those with epilepsy and their families, while promoting a better understanding of the disorder. It also brings to light that at least 1 in 26 Americans will develop epilepsy at some point in their lifetime, and prevalence may be increasing.

The Epilepsy Foundation applauds this landmark report that acknowledges the long-overdue examination of the public health burden of epilepsy, including:

A better collection of comprehensive data to gain a more complete understanding of the public health burden of the epilepsies
Improved access to patient-centered care that meets the complex range of physiological, psychological, cognitive and social needs of people living with epilepsy
Better access to community resources and quality of life for people and families living with epilepsy; and
A strategic health focus on studies that will lead to better treatment options, including preventions.

This is a huge step forward for the Epilepsy Community. The Foundation is encouraged to find that epilepsy, which is so often misunderstood and misrepresented in the public discourse, is finally being examined, analyzed and reported on in a way that will intensify our collective work. These findings also make a strong case for the government to considerably expand its recognition and response to the public health burden of epilepsy.

The Epilepsy Foundation of America is carefully reviewing the findings of this report and its recommendations, and are optimistic that all organizations committed to making life better for people with epilepsy, both in the private and public sector, will galvanize across all disciplines with one goal in mind: to effectively and strategically respond to the real and immediate needs of people with epilepsy and their families and to ensure the best information, care and understanding of the condition are being implemented and portrayed, both to the general public and health care practitioners.

To learn more about this IOM report click here or to view the presentation click here.

Call to Action

Julia — Wed, 07 Mar 2012 16:47:58 +0000

GOVERNOR CORBETT PROPOSES ELIMINATION OF EPILEPSY FUNDING IN BUDGET

ACT NOW – EPILEPSY HAS BEEN OVERLOOKED & UNDER FUNDED FOR TOO LONG!

On Tuesday, February 7, Governor Tom Corbett presented his state budget proposal to the General Assembly calling for the elimination of 33 state budget line items. Included in this is the Department of Health line item for epilepsy support services in Pennsylvania. The current state budget originally included $390,000 in state funding and $150,000 in federal funds for the epilepsy programs across the state. In early January, an administrative order reduced the state funding to $370,000.

PLEASE, take the time today to call or email members of the General Assembly, particularly those on the House & Senate Appropriations Committee. Ask them to maintain the line item for epilepsy services and to continue funding epilepsy programs into the 2012-2013 fiscal year.

Follow this link to find contact information for your legislator.

The appropriation dollars allow both the Epilepsy Foundation Eastern Pennsylvania (EFEPA) and the Epilepsy Foundation Western/Central Pennsylvania the ability to support seven offices across Pennsylvania. It makes it possible for both Epilepsy Foundations in Pennsylvania to reach out and help families affected by epilepsy. Without continued funding in a line item specifically for epilepsy services and programs, the Epilepsy Foundations in Pennsylvania will not be able to meet the demands for services. Let your legislator know that community programs for people who have seizures are important. Share your story about epilepsy with your legislator and ask for their help in continuing funding for local programs. Click here for a sample letter to send to your legislator.

HELP PROTECT OUR PROGRAMS – CONTACT YOUR LEGISLATOR TODAY!

March 2012 E-Newsletter

Julia — Tue, 06 Mar 2012 21:05:57 +0000

Visit our site

March 2012

CALL TO ACTION!

Governor Corbett Proposes Elimination of Epilepsy Funding in Budget

On Tuesday, February 7, Governor Tom Corbett presented his state budget proposal to the General Assembly calling for the elimination of 33 state budget line items. Included in this is the Department of Health line item for epilepsy support services in Pennsylvania. The current state budget originally included $390,000 in state funding and $150,000 in federal funds for epilepsy programs across the state. In early January, an administrative order reduced the state funding to $370,000.

These appropriation dollars allow both the Epilepsy Foundation Eastern Pennsylvania (EFEPA) and the Epilepsy Foundation Western/Central Pennsylvania the ability to support seven offices across Pennsylvania.

The EFEPA urges all epilepsy supporters to contact members of the General Assembly, particularly those on the House & Senate Appropriations Committee to urge them to maintain the line items for epilepsy services and to continue funding for epilepsy programs into the 2012-2013 fiscal year. Ask your local representative or senator to let the leadership know how important epilepsy programs are to you and your family.

You can find contact information for your legislator by clicking here.

Save the Date for Upcoming Events, Conferences and Programs

Conferences and Programs

Abington Memorial Hospital - Wednesday, March 14 - 6:30 pm – 8 pm – Mood & Memory

Come hear Pat Anasiewicz, RN, MSN, MBA, a Community Health Outreach Nurse from Lansdale Hospital discuss the effects of epilepsy/seizure disorder on your mood and memory. For questions or to register, contact Sue Livingston at slivingston@efepa.org.

Park City Mall – Lancaster – Tuesday, April 17 – 6 pm - 7 pm - Young Adult Epilepsy Meeting

This special hour-long meet and greet program, specifically for ages 14-22 will concentrate on group interactions and discussion on age-appropriate topics of interest. The group will meet in the Food Court outside of JC Penney. Refreshments and dessert will be provided. To RSVP, contact Kerri Michnya at kmichnya@efepa.org.

Lehigh Valley Health Network – Saturday, April 28 – 8 am - 1 pm – Lehigh Valley Epilepsy Education & Information 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. For more information or to register, please 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. For more information or to register, visit www.lancastercounty.kintera.org.
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 purchase tickets, please contact Madeline Bergman at development@efepa.org.

Saturday, June 16- 9:00 am – Summer Stroll 2012 – Forbidden Drive

Come join over 700 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

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. Please note that applications will be mailed out to all previous campers, you do not need to contact the EFEPA. For more information, contact efepa@efepa.org.

EFEPA “Lets the Good Times Roll” at Mardi Gras Gala

Osberg Family and Barbara Beck, CRNP

The EFEPA brought New Orleans’ most famous celebration to Philadelphia with our 5th Annual Mardi Gras Gala, held on Friday, February 10, 2012. We had over 400 guests join us to celebrate the coronation of 2012 Mardi Gras King, Greg Osberg. The night also served as the premier of our educational awareness video, “Faces of Epilepsy.” Dan Dougherty, a Foundation volunteer, played a pivotal role in the evening by introducing the video and speaking about how the EFEPA has played a part in his life. Dan said, “As a person with epilepsy for 30 years, my life has had many struggles, including not being able to drive since my seizures are uncontrolled. I have been encouraged by the Foundation to be an advocate and lift the mask of epilepsy to educate the public.”

Mardi Gras Party People

In addition to the video, EFEPA honored two volunteers who have worked decades to further our mission. Jeanne LeBuhn was awarded the Charley and Peggy Roach Founders Award for her 20 years of service. CHOP nurse practitioner and Camp Achieve nurse, Barbara Beck, CRNP was given the Eric Burton Osberg Award for being a medical professional dedicated to both the medical and non-medical needs of her patients.

Besides being a night of revelry, the Foundation netted over $70,000, our highest total to date! This could not have happened without the efforts of our sponsors, Mardi Gras Kings, both past and present, and all of their supporters. To view pictures from the Gala, please visit www.jonathanmeter.smugmug.com.

Support Group Information

Berks County – NEW

Location: Reading Hospital & Medical Center

First Meeting: April 12 (meetings start at 6:30 pm)

Bucks County

Location: St. Mary Medical Center

Upcoming Dates: April 5, May 3 (meetings start at 6:30 pm)

Delaware County

Location: Riddle Hospital

Upcoming Dates: March 21, April 18(meetings start at 6:30 pm)

Hazelton

Location: General Hospital

Upcoming Dates: March 14, April 11 (meetings start at 7 pm)

Lancaster

Location: Lancaster General Hospital

Upcoming Dates: March 28, April 25(meetings start at 6 pm)

Lehigh Valley

Location: Lehigh Valley Hospital Upcoming Dates: March 8, April 12 (meetings start at 6 pm)

Philadelphia

Location: JFK Community MH/MR Center

Upcoming Dates: March 20, April 17 (meetings start at 6 pm)

Scranton

Location: CMC Professional Bldg.

Upcoming Dates: March 21, April 18 (meetings start at 7 pm)

Wilkes- Barre

Location: John Heinz Institute Upcoming Dates: March 28, April 25 (meetings start at 7 pm)

For more information on Support Groups, please click here.

Talk About It Social

The Talk About It Social began as a camp reunion several years ago, and although it primarily remains a reunion, it has been open to children and teens who show an interest in Camp Achieve. Held on Sunday, January 8, there were over 90 people who attended, including many counselors and medical staff. Almost 30 of the 48 campers that attended Camp Achieve this year attended the Social with their families. A fun time was had by all!

Purple Day – March 26th

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people around the world are invited to wear purple and host events in support of epilepsy awareness. To hear what the EFEPA is doing for Purple Day, check out our Facebook page. Thinking about planning an event for Purple Day? Get more information on our Third Party Events here.

Join EFEPA at the National Walk for Epilepsy

Come support the Epilepsy Foundation Eastern Pennsylvania and the Epilepsy Foundation at this year’s National Walk for Epilepsy on Saturday, March 31st in Washington, DC. The National Walk for Epilepsy is a family oriented, non-competitive walk in our nation’s capital to raise awareness and funds to continue the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Help us make a difference by registering today.

To register, please visit Epilepsy Foundation’s National Walk for Epilepsy homepage. When you register, make sure to join our team, the Epilepsy Foundation Eastern PA or create your own team, but sign up under the Epilepsy Foundation Eastern PA as the company. By joining the Epilepsy Foundation Eastern PA’s team or company, all fundraised dollars will go directly to support epilepsy programs in our service area. Can’t make it to DC? Join in the fun and fundraise for this important cause, by registering as a “Virtual Walker.” Looking forward to seeing you in Washington, DC!

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

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

_____________________________________________________________________________________

Young Friends Mardi Gras Gala

Julia — Tue, 17 Jan 2012 04:34:12 +0000

PURCHASE YOUR TICKETS TODAY: www.mardigrasphilly.kintera.org

ONFI (clobazam) Tablets now Available in the U.S. at Pharmacies

Julia — Wed, 11 Jan 2012 17:53:07 +0000

DEERFIELD, Ill.–(BUSINESS WIRE)–Lundbeck announced today that ONFI Tablets are now available for prescribing in the United States. The FDA recently approved ONFI for adjunctive treatment of seizures associated with Lennox-Gastaut syndrome (LGS) in patients two years and older.¹ ONFI is an oral anti-epileptic drug (AED) of the benzodiazepine class, and is a 1,5 benzodiazepine.¹ ONFI (pronounced “ON-fē”) is a federally controlled schedule four substance (C-IV).

“In clinical trials, ONFI was shown to be an effective add-on therapy for seizures associated with LGS in adults and children two years and older. ONFI’s availability is important news for patients and their caregivers to discuss with physicians.”

“The availability of ONFI is the result of extensive efforts over many years by our team here at Lundbeck and the medical community,” said Staffan Schüberg, president of Lundbeck in the U.S. “We have been inspired by the courage of patients and families impacted by LGS, and their strength never to give up on the goal of additional seizure management. Recognizing the need for additional treatment options due to the intractable nature of this challenging seizure disorder, we are very pleased to make ONFI available in the U.S.”

LGS is a rare and severe form of epilepsy that is typically diagnosed in childhood and often persists into adulthood.^2,3 LGS is associated with multiple types of seizures with periods of frequent seizures, and daily seizures are common.⁴ Some of these seizures, including atonic, tonic and myoclonic seizures, may cause falls, or “drop seizures” (also referred to as “drop attacks”), which may result in injury.²

“LGS can take a toll on even the strongest families due to the frequency and severity of seizures, including drop seizures.” said Yu-Tze Ng, director of epilepsy at the University of Oklahoma Medical School and lead investigator of clinical trials supporting the approval of ONFI. “In clinical trials, ONFI was shown to be an effective add-on therapy for seizures associated with LGS in adults and children two years and older. ONFI’s availability is important news for patients and their caregivers to discuss with physicians.”

Support to Help Patients Get Access to ONFI

ONFI is available to patients at retail pharmacies with a prescription from a healthcare professional. Additionally, if a healthcare professional elects, Lundbeck has created the ONFI Support Center that will assist healthcare professionals and patients with benefits investigation, prior authorizations and is responsible for Lundbeck’s patient assistance program. Where permissible, a sample voucher program will provide a free ONFI trial to any eligible patient. Also, co-pay assistance is being made available to those who are eligible. The ONFI Support Center is available by calling 855-345-6634.

About ONFI

ONFI is an oral antiepileptic drug developed in the United States by Lundbeck, and will be available in 5-mg, 10-mg, and 20-mg tablets. ONFI is a 1,5 benzodiazepine. The exact mechanism of action for ONFI is not fully understood, but is thought to involve potentiation of GABAergic neurotransmission resulting from binding at the benzodiazepine site of the GABA_Areceptor.¹

For more information, please visit www.ONFI.com.

Important Safety Information

ONFI can make you sleepy or dizzy and can slow your thinking and make you clumsy which may get better over time. Do not drive, operate heavy machinery, or other dangerous activities until you know how ONFI affects you. Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider as your sleepiness or dizziness may get much worse.
ONFI can cause withdrawal symptoms. Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps.
ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence.
Like other antiepileptic drugs, ONFI may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any symptoms, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you.
Tell your healthcare provider about all of your medical conditions including liver or kidney problems, lung problems (respiratory disease), depression, mood problems, or suicidal thoughts or behavior.
If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant.
ONFI can pass into breast milk. You and your healthcare provider should decide if you should take ONFI or breast feed. You should not do both.
Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins and herbal supplements as taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best method to use.
The most common side effects seen in ONFI patients include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

For more information, please see the ONFI Medication Guide and full Prescribing Information.

ONFI is a trademark of Lundbeck.

About Lundbeck in the U.S.

A wholly owned subsidiary of H. Lundbeck A/S of Denmark, Lundbeck in the United States is headquartered in Deerfield, Illinois, and is committed to providing innovative specialty therapies that fulfill unmet medical needs of people with central nervous system (CNS) disorders, including challenging seizure disorders.

With a special commitment to addressing the needs of the epilepsy community, Lundbeck makes several therapies available in the United States for people with difficult-to-treat seizure disorders. Each year, Lundbeck employees actively support and participate in community-based initiatives, including more than 100 epilepsy awareness events, as part of an ongoing commitment to make a difference for those impacted by epilepsy.

For more information, please visit www.lundbeckus.com.

About Lundbeck

H. Lundbeck A/S (LUN.CO, LUN DC, HLUKY) is an international pharmaceutical company highly committed to improving the quality of life for people suffering from brain disorders. For this purpose, Lundbeck is engaged in the research, development, production, marketing and sale of pharmaceuticals across the world. The company’s products are targeted at disorders such as depression and anxiety, schizophrenia, insomnia, epilepsy, and Huntington’s, Alzheimer’s and Parkinson’s diseases.

Lundbeck was founded in 1915 by Hans Lundbeck in Copenhagen, Denmark. Today Lundbeck employs approximately 5,900 people worldwide. Lundbeck is one of the world’s leading pharmaceutical companies working with brain disorders. In 2010, the company’s revenue was DKK 14.8 billion (approximately EUR 2.0 billion or USD 2.6 billion). For more information, please visit www.lundbeck.com.

Sources

1. ONFI Full Prescribing Information. Deerfield, IL: Lundbeck. October 2011.

2. Van Rijckevorsel, Kenou et al. Treatment of Lennox-Gastaut syndrome: overview and recent findings. Neuropsychiatric Disease and Treatment. 2008: 4(6) 1001-1019.

3. Glauser, Tracey. Lennox-Gastaut Syndrome. Medscape. 2011. http://emedicine.medscape.com/article/1176735-overview. Last accessed 9/23/11.

4. Borggraefe I, Noachtar S. Pharmacotherapy of Seizures Associated with Lennox-Gastaut Syndrome. Clinical Medicine Insights: Therapeutics. 2010:2 15-24.

Contacts

Lundbeck
Matt Flesch, 847-282-1154

Gregory Osberg of Philadelphia Media Network, Inc. to be Crowned King of Mardi Gras

Julia — Fri, 06 Jan 2012 02:24:49 +0000

CONTACT:

Madeline Bergman, Development Assistant

215-629-5003 x106

development@efepa.org

FOR IMMEDIATE RELEASE

GREGORY J. OSBERG TO BE CROWNED KING
OF MARDI GRAS GALA

Publisher and CEO of Philadelphia Media Network Inc., Gregory J. Osberg to be honored local non-profit’s annual Mardi Gras Gala

PHILADELPHIA—December 20, 2011– Gregory J. Osberg, Publisher and CEO of Philadelphia Media Network, Inc. will be crowned King of the 5^th Annual Mardi Gras Gala on Friday, February 10^th, 2012. The Gala honors a Philadelphia leader for their commitment to those living with epilepsy/seizure disorder. The black-tie fundraiser with N’awlins flair of beads, masks and hurricanes benefits the Epilepsy Foundation Eastern Pennsylvania.

The festivities take place at the Crystal Tea Room in Center City, Philadelphia. The night begins with a cocktail reception at 7:00 pm, followed by Osberg’s coronation at 8:00 pm. In addition to honoring Osberg, the Foundation will also be awarding Barbara Beck, pediatric nurse practitioner in the Neurology department at Children’s Hospital of Philadelphia and Jeanne LeBuhn of Devon, PA for their dedication and work with the Foundation. The evening will also host the premier of an educational and promotional video “Faces of Epilepsy”. After the program and dinner, Tribeca Grand Band will provide lively music for a night full of dancing and fun.

Osberg will be joining the court of past kings, Ted McCormick, Vice President of Patient Services, University of Pennsylvania Health System; Stephen Wouch, CPA, CFF, Managing Partner of Wouch, Maloney & Co., LLP; and Ted Riss, owner of Riss General Construction, LLC and Dr. Mike Cirgigliano, Fox 29 News Medical Correspondent and owner of The Clinical Practices of Michael D. Cirigliano. Together the five kings will “laissez les bons temps rouler…”

About Gregory J. Osberg
Gregory J. Osberg is the Publisher and Chief Executive Officer for Philadelphia Media Network (PMN), Inc., which owns The Philadelphia Inquirer, Philadelphia Daily News, Philadelphia Sportsweek and Philly.com. Prior to joining PMN, Osberg served as President and CEO of Buzzwire, a mobile media company specializing in video content. Osberg has spent 30 years in the magazine and Internet publishing business, including leadership positions with The Washington Post Company (Newsweek), CNET, and U.S. News and World Report.

About EFEPA
The EFEPA is a nonprofit, 501(c)(3) voluntary health organization dedicated to meeting the non medical needs of those with epilepsy. Through its innovative programs and services – public education, information, referral, employment training, advocacy, summer camp, community education events, seminars and workshops- the EFEPA endeavors improve the quality of life for persons with epilepsy/seizure disorder and to dispel the myths, stigma and misunderstandings associated with it. For more information, please visit www.efepa.org.

EFEPA 2012 Mardi Gras Facts

WHAT: Mardi Gras Gala to support the Epilepsy Foundation Eastern PA

WHERE: Crystal Tea Room
100 E Penn Square, 9^th Floor

WHEN: Friday, February 10, 2011, 7:00 pm – 12:00 am

WHO: Coronation of Gregory J. Osberg as the 2012 Mardi Gras King
Publisher and CEP, Philadelphia Media Network, Inc.

WHY: All proceeds benefit the Epilepsy Foundation Eastern PA to continue their goal of meeting the non-medical needs associated with epilepsy. This year, the EFEPA is launching a First Responders Training, a class specifically designed for educating EMTs and police officers on seizure recognition and proper first-aid for all seizure types. Individuals with epilepsy and their caregivers put their health and safety in the hands of our emergency personnel and assume that they are appropriately trained. In emergency personnel’s current curriculum, only convulsive, tonic-clonic seizures are discussed; not the wide range of seizure types and the after-affects. The Foundation is working with EMTs, police officers, or other first responders, to better inform them about epilepsy.

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Help us Better Educate First Responders in 2012

Julia — Wed, 28 Dec 2011 04:56:56 +0000

Josh, an Epilepsy Foundation Eastern PA volunteer, first started working with the EFEPA as a Camp Achieve counselor which led him to establish the EFEPA Youth Council. He is taking his passion for the Foundation and his career as a First Responder to help the EFEPA with a new, important initiative: educating emergency personnel on seizure recognition and proper seizure first-aid.

After Josh had his first seizure in 2006 during his high school graduation, he knew his life was going to change. A summer that was supposed to be filled with graduation parties and summer classes at college turned into a summer of neurology appointments and many medical tests. After a visit to the Children’s Hospital, where he saw children affected by uncontrollable seizures, he was compelled to begin a career as an Emergency Medical Technician (EMT).

Now, five years later, at the age of 23, Josh is a nationally registered Paramedic. Throughout his schooling and training, he was stunned to see how little attention was paid to epilepsy/seizure disorder. “Anytime epilepsy was mentioned in class, we learned what to do in case we saw someone having a convulsive, tonic-clonic seizure”, said Josh. “We never learned about the other types of seizures and the after-effects.”

This omission in first responders’ training is unacceptable.

Seizures come in many forms and can often be mistaken for other illness or behaviors. Individuals with epilepsy and their caregivers put their health and safety in the hands of our emergency personnel and assume that they are appropriately trained. If an EMT, police officer, or other first responder, makes a mistake in recognizing and reacting to a seizure, it can lead to devastating results.

To better educate first responders, the EFEPA developed an educational program specifically for EMS and law enforcement. This 90-minute course covers seizure recognition and proper first-aid management. Will you donate today and help us reach our goal to train 500 emergency personnel in 2012 throughout our 18-county service area?

Your donation will make a difference. Consider contributing at the following levels:

Materials for 1 EMS and 1 Police Officer – $30
Seizure Recognition and First Aid Sheets and Cards provided to a station – $50
Mailing Seizure First-aid sheets and cards to an area’s First Responders – $100
Training for an entire EMT Company – $250
Training for an entire Police Department – $500
Training for First Responders throughout an entire township: $1,000

Click here to donate.

You can also help yourself in this process by doing the following:

Keep a Seizure First-Aid business card in your wallet or give to a caregiver. Download seizure first-aid information.
Place seizure first-aid information and a list of your medication, including emergency medications & procedures in an easy-to-find location, like on your refrigerator.
Wear a Medical ID bracelet.
Have a contact listed as “ICE” (In Case of Emergency) in your cell phone and with your seizure first-aid information at home.
Contact your local ambulance company, fire department or police department to tell them about your epilepsy and encourage them to contact the EFEPA to receive proper training.

The Foundation looks forward to updating you throughout the year on the progress of the First Responders’ Training in reaching our goal. We encourage you to check back for stories regarding this program and to hear when a training will be held in your area.

Wishing you a Happy and Healthy New Year!