Epilepsy Foundation

Angela's Blog (24)

Opportunity for Dialogue - CER Event in D.C.

The Epilepsy Foundation has been a strong supporter of comparative effectiveness research, recognizing its potential to strengthen the use of evidence-based medicine in health care delivery and to improve care for the more than 2.2 million Americans living with epilepsy.

As we move closer to seeing actual research products from the Patient Centered Outcomes Research Institute (PCORI), it’s time that we begin pivoting our discussions about CER from a focus on its potential to a…

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Added by Angela on September 24, 2013 at 9:30am — No Comments

Questions? What do you want to know about Epilepsy advocacy?

Do you advocate? What does that even mean?

Added by Angela on July 11, 2013 at 11:00am — No Comments

The Epilepsy Foundation’s annual Public Policy Institute and Kids Speak Up! conference was held April 21 through 23  in Washington, DC. Representatives from 28 states and 35 affiliates participated i…

The Epilepsy Foundation’s annual Public Policy Institute and Kids Speak Up! conference was held April 21 through 23  in Washington, DC. Representatives from 28 states and 35 affiliates participated in the conference and Hill day, which brought together 154 teens, parents, affiliates and volunteers for a day and a half of learning and advocacy training that culminated with a Hill day on April 23. Families and affiliates…

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Added by Angela on June 7, 2013 at 2:26pm — No Comments

Saluting our Nation’s Veterans

Veterans Day was formally observed on November 11th at Arlington National Cemetery with a wreath laying ceremony at the Tomb of the Unknowns, a parade of colors by veterans' organizations, and remarks from dignitaries. For many the recognition of Veterans Day continues today, on this federal holiday with school or community activities recognizing members of our military.  We at the Epilepsy Foundation want to salute all of our active, retired, and deceased military.

 

In 2008,…

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Added by Angela on November 14, 2012 at 11:21am — 1 Comment

Hurricane Sandy

OFFICE OF DISABILITY INTEGRATION AND COORDINATION ADVISORY

FEMA PREPARES AS HURRICANE SANDY MOVES CLOSER TO U.S. COAST

October 28, 2012



Hurricane Sandy Status as of 11 a.m. EDT

As of 11 a.m. EDT, the National Weather Service reported that the center of Hurricane Sandy was about 250 miles southeast of Cape Hatteras, NC; approximately 575 miles south of New York City.

Sandy has sustained winds of 75 miles per hour

A Tropical Storm Warning is in effect for Cape… Continue

Added by Angela on October 28, 2012 at 10:21pm — No Comments

GOTV -- it is not a new channel or fall program, it is about your civic duty!

During election season, the Epilepsy Foundation wants to thank you for your advocacy on behalf of our legislative priorities and to further this citizenship we remind to exercise your right as a citizen to vote on Tuesday, November 6th.

 

While the Foundation does not endorse any particular candidate in this election, we do endorse you ensuring your voice and the voice of the epilepsy community is heard through your vote. The Foundation is only as strong as its…

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Added by Angela on October 24, 2012 at 4:30pm — No Comments

Epilepsy Impact on the ACA decision -- community responds to Michael Savage

TONY COELHO RESPONDS TO COMMENTS ON EPILEPSY & THE ACA

 

At a time when our community is celebrating the United States Supreme Court decision to uphold the Affordable Care Act, a true victory for millions of Americans living with chronic disease or disability, there have been some prejudiced and inaccurate statements about epilepsy and its treatment.  The Epilepsy Foundation and countless other organizations, policy leaders, and citizens supported the…

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Added by Angela on June 29, 2012 at 4:06pm — No Comments

Epilepsy Foundation Reacts to Supreme Court Ruling - A victory for our community

EPILEPSY FOUNDATION APPALUDS HEALTHCARE RULING

WASHINGTON--The Epilepsy Foundation expresses support for the United States Supreme Court’s decision to uphold the Affordable Care Act (ACA).

“This is a victory, not only for people with epilepsy, but also for millions of Americans living with chronic disease or disability who will now have access to health insurance due to this landmark law,” said Tony Coelho, President & CEO of the Epilepsy…

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Added by Angela on June 28, 2012 at 2:23pm — 4 Comments

RAISE - the time is NOW

Supporting RAISE House Resolution 298- Epilepsy Awareness:  Last week, the Epilepsy Foundation staff and advocates were on Capitol Hill and visiting house members who have yet to cosponsor the RAISE Resolution.  In response, two members joined as cosponsors, Rep. Sandy Levin (MI) and Rep. Ed Pastor (AZ).  Representatives Levin and Pastor increased the total number of RAISE sponsors to 60. The Foundation’s sponsorship goal for the resolution is 100.  This number will help…

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Added by Angela on June 6, 2012 at 12:30pm — No Comments

TSA Shares Tips to Streamline Summer Travel

WASHINGTON – As more than 200 million passengers begin their summer travel, the Transportation Security Administration (TSA) reminds travelers of recent modifications to airport screening procedures and provides tips for travel preparations.

As part of TSA’s risk-based security approach, the agency has implemented changes in screening protocols that strengthen aviation security by better focusing its resources and, at the same time, improving the travel experience for lower risk…

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Added by Angela on May 31, 2012 at 1:58pm — No Comments

DOL's Office of Disability Employment Policy has launched its first disability-related application challenge

From the Challenge.Gov website: http://disability.challenge.gov/

Nearly twenty-two years after the passage of the Americans with Disabilities Act and thirty-nine years after the passage of the Rehabilitation Act of 1973 - two of the most significant disability employment-related pieces legislation in American history - people with disabilities continue to be employed at much lower levels than people without disabilities/the general…

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Added by Angela on May 24, 2012 at 3:20pm — No Comments

Are you part of the 100?

Here at the Epilepsy Foundation Government Relations Department we have decided it is time to raise the stakes, raise your hand in awareness, raise our efforts, raise epilepsy awareness, that it is TIME TO R.A.I.S.E. THE STAKES!  Do you sense a theme? 

 

House Resolution 298 (Raising Awareness and Insight on Seizures and Epilepsy) was created to promote greater awareness and understanding about epilepsy among government agencies and…

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Added by Angela on February 10, 2012 at 11:56am — No Comments

TSA Helpline for Travelers with Disabilities

Please see the below links and press release regarding a new service from the TSA for travel.…

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Added by Angela on January 30, 2012 at 10:14am — No Comments

State of the Union-- What would YOU ask the President?

What would YOU ask President Obama?

Save the Date &  Ask for support of Epilepsy Programs!

President Obama on Google+ Chat

Monday, January 30

 

Immediately following the President’s State of the Union speech on Tuesday, be sure to stay tuned to…

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Added by Angela on January 23, 2012 at 3:30pm — 5 Comments

Transition & Change from School to Community- Join live Webinar for parents & caregivers

The Epilepsy Foundation will be hosting a webinar, a live web chat and presentation for parents and caregivers on how to successfully transition children with LGS (Lennox-Gastaut Syndrome) or severe epilepsy from school into the community.  The webinar will cover legal rights and best medical practices for a smooth and effective transition.

 

This time period, from school to community, can be difficult for families whose children are now becoming young adults.  We hear from…

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Added by Angela on November 22, 2011 at 4:30pm — No Comments

TSA Holiday Travel

TSA Provides Updates to Travelers on Security Procedures for the Holiday Travel Season



WASHINGTON
– The Transportation Security Administration (TSA) today highlighted security procedures ahead of the busy holiday travel period and reminded travelers about the steps they can take to be prepared for airport security. Over the past few months, TSA has implemented a number of new risk-based security measures, including expedited prescreening initiatives…

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Added by Angela on November 17, 2011 at 4:55pm — No Comments

What is ESSENTIAL to you?

What is essential to your epilepsy care?  What coverage do you need?  What obstacles have you faced in trying to gain or maintain access to treatments or specialists?  What is an "essential health care benefit" to you? 

For many people essential benefits may mean coverage of their neurologist or epileptologits visits.  Others may be solely focused on affordable access to their SPECIFIC epilepsy medication.  Health care systems (hospitals,…

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Added by Angela on November 8, 2011 at 4:00pm — 2 Comments

Nationwide - FEMA notice of emergency testing via TV

We are receiving this notice through many list serves and wanted to share in case anyone has not yet seen announcements about this upcoming national test of tv emergency notice systems:

 

THERE WILL BE A TV EMERGENCY MESSAGE TEST ON NOVEMBER 9, 2011 AT



2:00 P.M. EST AND IT WILL BE ONLY A TEST!



YOU DO NOT HAVE TO TAKE ANY ACTION!



ONLY A TEST. On November 9, 2011, at 2 PM Eastern Standard Time (EST, which is 11 AM Pacific Time), the Federal…

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Added by Angela on November 4, 2011 at 2:02pm — No Comments

Change of Plans? Medicare Open Enrollment

Medicare Part D open enrollment began on Saturday.  Now is a great time to review your Medicare prescription drug coverage (Part D) and decide if it is time to make a change for better coverage or savings.  You can also take this time to help a relative or neighbor review their plan needs or at least let them know that now is the time to review their plan.…

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Added by Angela on October 18, 2011 at 2:42pm — No Comments

Why Medicaid Matters

Medicare and Medicaid have played a critical role in the lives and the futures of roughly 100 million children, adults, and seniors with disabilities. While Medicare is a program for retirees and individuals who are on social security disability insurance, Medicaid is a benefit program that provides healthcare services to people with low incomes. Medicaid is the nation’s primary health insurance program for persons with…

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Added by Angela on October 13, 2011 at 10:34am — 2 Comments

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