Local Family Unites Southwest Florida Residents in Support of Seizure Disorders

4th Annual SWFL Walk the Talk for Epilepsy raises over $60,000 to benefit Floridians with epilepsy

 

Naples, Florida, November 5, 2013 — On November 2, more than 400 people came together to raise over $60,000  at the 4th Annual SW Florida Walk the Talk for Epilepsy.

 

North Collier Regional Park was colored purple Saturday as Southwest Florida residents arrived to support friends, family and loved ones living with epilepsy. Participants showed their support for the thousands of area residents facing the trials created by seizure disorders, and made it their goal to spread awareness.

 

The walk was led by this year’s Hero, Michael Weinstein, and his family, followed by the newly formed Teen Adventures Club. Olivia Davis was honored with the Clayton Feig Award.

 

This is the second largest walk for epilepsy in the state of Florida, and it is made possible through the work of Naples resident and volunteer Dan Rosenfeld, the Epilepsy Foundation of Florida and a planning committee consisting of Burt and Lizzie Golumbic, Brian and Rachel Kirk, Scott and Hetty Weinstein, and Gordon and Tambra Wolfe.

 

Dan, who was diagnosed with epilepsy at age 11, is a mentor and advocate for epilepsy awareness.

 

“Year after year, Dan and his family show us that hard work and dedication go a long way,” said Karen Basha Egozi, CEO of EFOF. “They are truly devoted, and we are grateful for all that they do to help the 375,000 Floridians living with epilepsy.”

 

The event featured many activities including arts and crafts, face painting and information about seizure dogs. Guests also participated in silent auctions and raffles and received prizes for the largest teams and fundraisers.

 

Funds raised will be used toward the Southwest Florida Educational Series/Support Group, which meets monthly, and to send local kids to Camp Boggy Creek. They also benefit the newly formed Southwest Florida Epilepsy Teen Adventures Club, educational programs for the schools systems in Lee and Collier Counties and efforts to educate the local public.

 

Emily Dishnow, news anchor at Fox 4 Now, was the emcee for the event and entertainment was provided by Sarah Hadeka and Friends, who donated her time for a second year.

 

The walk’s success was made possible by the work of many friends, families and neighbors who through their combined efforts helped surpass the amount of funds raised in previous walks. 

 

Sponsorships included contributions from GL Homes and Morgan & Morgan, who continue to support the walk since its first year, as well as Germain Honda of Naples and Germain BMW of Naples. 

 

 

Epilepsy Foundation of Florida Receives Funding to Help Floridians Navigate Through the Health Insurance Marketplace

 

The Epilepsy Foundation of Florida is one of 8 organizations in Florida to receive a portion of the $67 million offer by HHS.


Health and Human Services (HHS) Secretary Kathleen Sebelius recently announced $67 million in grant awards to 105 Navigator grant applicants in Federally-facilitated and State Partnership Marketplaces. Epilepsy Foundation of Florida (EFOF) CEO, Karen Basha Egozi says “The EFOF will serve as one of eight Florida entities chosen to provide in-person resources for Floridians who want additional assistance in shopping for and enrolling in plans in the Health Insurance Marketplace beginning this fall.”

 “The EFOF a navigators will assist consumers in understanding their coverage options in the Marketplace,” said Karen Basha Egozi “A network of volunteers on the ground – health care providers, business leaders, faith leaders, community groups, advocates, and local elected officials – can help  us spread the word and encourage their neighbors to get enrolled.”

 EFOF staff will be trained to provide unbiased information in a culturally competent manner to consumers about health insurance, the new Health Insurance Marketplaces, qualified health plans, and public programs including Medicaid and the Children’s Health Insurance Program. The Navigator funding opportunity announcement was open to eligible private and public groups and people who are self-employed who met certain standards to promote effectiveness, diversity, and program integrity.

 

 EFOF staff will be required to adhere to strict security and privacy standards – including how to safeguard a consumer’s personal information. They’ll be required to complete 20-30 hours of training to be certified, will take additional training throughout the year, and will renew their certification yearly. All types of enrollment assisters – including in-person assistors, Certified Application Counselors, and agents and brokers – are required to complete specific training and are subject to federal criminal penalties for violations of privacy or fraud statutes, on top of any relevant state law penalties. 

Stronger Together

As we shift gears and move faster and further into 2013, our Epilepsy Foundation CEO Phil Gattone and I want to thank you for your overwhelmingly positive response to our strategic merger with EF.  As you know, ETP collaborated closely over the years with other leading epilepsy organizations and in particular the Epilepsy Foundation. Our merger is the culmination of a very successful partnership that has funded new therapies for nearly a decade.  I am thrilled to share with you an overview of what has been achieved in the first weeks of 2013 as well as to highlight a few key dates in the coming months.

  • The Epilepsy Therapy Project and the Epilepsy Foundation merger became final on January 1.
  • Our now single organization, known as the Epilepsy Foundation,  allows us to execute with greater economy and have even greater impact. The Epilepsy Therapy Project will continue to work to advance new therapies in a time frame that matters under the EF umbrella, ETP’s work and brand continue. ETP operated as a lean organization, a nonprofit with a business like focus in putting dollars to work where they can have the greatest impact.   In joining with EF we are able to bring an even greater portion of every dollar raised directly to new therapies. By coming together, ETP and EF harness greater critical mass, energy and credibility both to our ETP mission of acceleration of new therapies and to the broad EF mission to improve the lives of people with epilepsy.
  • The mission of the new Foundation is to stop seizures and SUDEP, accelerate new treatments and find a cure for epilepsy while helping individuals and families overcome the challenges created by epilepsy. We accomplish these goals in three primary ways:
    • The first is through education. We connect people with epilepsy, their families, loved ones, care providers, researchers and other important professionals to the most comprehensive information available on key developments, best practices as well as critical news from the epilepsy pipeline. In fact, the epilepsy pipeline “lives” on our robust ETP website,epilepsy.com. Epilepsy.com will continue as a valuable resource for the new Foundation, its Affiliates and the broader community of people with epilepsy.  The premier portal globally in the field of epilepsy, our site soon will serve more than 500,000 unique visitors monthly, with page views of more than one million.   This complements the historic support each of the EF national affiliates provides to children and families in their individual communities. These 47 dedicated affiliates provide programs and services at no cost to people living with epilepsy and their loved ones.
    • We accelerate new therapies and advance a cure by funding the best ideas we can find anywhere in the world. In 2012 three of our EF/ETP funded projects made it to patients: the Visualase MR guided laser system for epilepsy surgery; the SmartWatch seizure detection and caregivers notification device; and most recently, the non-invasive NeuroSigma eTNS stimulator for control of seizures was approved in Europe. We remain fully committed to ETP’s driving principle of delivering new therapies in a timeframe that matters.
    • Advocacy is the third pillar of our efforts because epilepsy is broadly underfunded and widely misunderstood. All of our loved ones deserve so much more than this unacceptable status quo. Our brand of advocacy is passionate and impatient and keenly focused on changing the future for people with epilepsy. This means increased public funding, more public private and strategic partnerships, improved awareness and understanding – now.

As the Chairman of Faster Cures Michael Milken points out, “Across all diseases and life-threatening conditions, patient-focused organizations – and patients themselves – are leading the way toward better treatments.” “The merged resources of the Epilepsy Therapy Project and the Epilepsy Foundation will give individuals living with the condition – and their families – an even stronger advocate and partner working to accelerate research and discovery.” I’m including  a copy of the complete press release which included Mike’s comments.

A few of the highlights of our 2013 calendar thus far include:

  • The 64 Shark Tank II applications received as of the February 1st deadline.  This is more than a 50% increase over the 43 applications received for last year’s first Shark Tank competition. We are excited that this $100,000 competition will take place during the AEDD Conference in Florida in May.
  • February 25 inaugural meeting of the newly formed EF SUDEP Institute;
  • February 28 deadline for letters of intent for the Spring ETP New Therapy Grant Awards Cycle:
  • March 15 Team ETP will participate for the first time in the Los Angeles Marathon adding a west coast  component to the Marine Corps, New York, Chicago and Philadelphia marathons which follow this fall;
  • April 20 is the National Epilepsy Walk in Washington, DC;
  • May 13-15 is when our own -- and currently the President of the American Epilepsy Society – Dr. Jackie French leads the AEDD Trials XII Conference in Florida which for the first time will also include the Shark Tank II competition.

Our merger is an exceptional opportunity. It is a demonstration of our deep commitment to making a real difference in the lives of people living with epilepsy today.  We are excited to be bringing our vital mission and unique approach to a wider audience in the epilepsy community and beyond and to achieving greater impact.  Together we are stronger.

Best regards,


Warren Lammert
Chairman and Co-Founder
Epilepsy Therapy Project

MAYOR FLETCHER TO OFFICIATE SATURDAY’S EPILEPSY WALK

Epilepsy Walk this Saturday, February 9, at Riverside Park in Vero Beach

 

Vero Beach, Fla. – Vero Beach Mayor Craig Fletcher will officiate the 2nd Annual “Walk the Talk for Epilepsy Awareness” walk-a-thon in Vero Beach on February 9 at Riverside Park. Indian River County Sheriff Deryl Loar will also be present to cut the ribbon and send this year’s walkers on their way.

Proceeds from the walk, started last year as a grass roots effort by Vero Beach teen Christopher Flaig, will support Epilepsy Foundation of Florida services such as direct medical and neuropsychological services, advocacy and counseling, education, prevention and more for people diagnosed with epilepsy and seizure disorders.

Flaig is one of the more than 375,000 Floridians who are stricken with the disorder. Flaig first organized the event last year because epilepsy, despite its prevalence, does not attract the widespread attention, research and funding as other major neurological conditions. “We’re very proud and appreciative of an individual like Christopher to take such strong initiative in advocating our cause,” said Karen Basha Egozi, EFOF chief executive officer. “The more attention and support we raise, the more we can serve the community and come closer to preventing epilepsy for thousands of other Floridians.”

The walk-a-thon will begin with registration at 8 a.m. at Riverside Park in Vero Beach. Registration is free, but walkers are requested to raise at least $50 in pledges. T-shirts and other gifts will be distributed, and prizes will be awarded for the largest fundraiser.

For more details on the Vero event, call Cynthia on 772-776-6258. Registration forms and additional information can be found at www.EpilepsyFLA.org.

 

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EPILEPSY FOUNDATION AND EPILEPSY THERAPY PROJECT FINALIZE MERGER TO CREATE STRONG, UNIFIED ORGANIZATION TO SUPPORT PEOPLE WITH EPILEPSY

New foundation will drive awareness, supportive care and accelerate new therapies for millions of people living with seizures

Washington, DC, December 26, 2012 – The Epilepsy Foundation (EF) and the Epilepsy Therapy Project (ETP) announced today that their Boards of Directors have unanimously approved the merger of the two organizations.  The new organization, known as the Epilepsy Foundation, will fight for more than two million Americans and their families living with epilepsy today and the one in 26 Americans who will develop epilepsy at some point in their lives.  The new mission of the Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.  This strategic merger of the EF and ETP has garnered tremendous support from leaders in the healthcare advocacy and research communities. 

“The Epilepsy Community has an obligation and now an opportunity to step forward with a strong unified voice to bring greater resources to bear at the national and at the local level to improve the lives of people with epilepsy” said Warren Lammert, Chairman and co-founder of the Epilepsy Therapy Project.  “The merger of the EF and ETP creates an opportunity, working together with the 47 local affiliates of the Epilepsy Foundation, to be make a real difference through a comprehensive agenda that includes education, advocacy, awareness, local services and supporting research and the development of new therapies in a time frame that matters to people living with epilepsy today. 

“Across all diseases and life-threatening conditions, patient-focused organizations – and patients themselves – are leading the way toward better treatments,” said Michael Milken, chairman of FasterCures.  “The merged resources of the Epilepsy Therapy Project and the Epilepsy Foundation will give individuals living with the condition – and their families – an even stronger advocate and partner working to accelerate research and discovery.”  Since 1998, the Milken Family Foundation has worked alongside the Epilepsy Therapy Project and the Epilepsy Foundation, providing funding to young investigators focused on developing more effective treatments for the condition.

Under the agreement, the Epilepsy Therapy Project will continue supporting scientific and clinical research with an emphasis on translational medicine and new product development under the Epilepsy Foundation umbrella.  Phil Gattone, EF President and CEO, will continue to lead the Epilepsy Foundation.  Warren Lammert, ETP Chairman and Co-founder, will serve on the board of directors of the new organization and play a crucial role during the merger transition period.  Members of both boards, representing some of the most renowned researchers and practitioners in epilepsy, will hold seats on a newly formed board of directors.  The award-winning patient care website www.epilepsy.com will serve as the premier source of accurate information regarding epilepsy and seizures.  The new organization will be headquartered in Landover, MD with 48 regional affiliate offices located throughout the United States. 

“Epilepsy is more prevalent than autism, multiple sclerosis, cerebral palsy and Parkinson’s disease combined – and takes thousands of lives each year.  This is why we need to advance the cause of epilepsy together and forcefully,” said Gattone, also the father of a child with epilepsy.  “This Foundation and our affiliates are at the forefront of transforming how we comprehend, treat and support people with epilepsy – from government lobbying at the national level to supporting the child and family in your community.  Our affiliated chapters around the country provide free services to all.  We are dedicated to helping address the public health dimensions associated with seizure disorders, including access to care, challenges in school, Sudden Unexplained Death in Epilepsy (SUDEP) and other devastating consequences of uncontrolled seizures, furthering opportunities for gainful employment and independent living.”

The new Epilepsy Foundation brings together the mission and assets of both organizations:

  • -epilepsy.com, the leading portal for people, caregivers and professionals dealing with epilepsy;
  • -48 affiliated Epilepsy Foundations around the country dedicated to providing free programs and services to people living with epilepsy and their loved ones;
  • -Scientific, Professional and Business Advisory Boards comprised of leading epilepsy physicians, health care professionals and researchers, industry professionals and investors with experience in clinical care, as well as in the evaluation and commercialization of new therapies;
  • -A track record of identifying and supporting important new science, translational research programs, and the most promising new therapies;
  • -The Epilepsy Pipeline Conference, a leading global forum organized in partnership with the Epilepsy Study Consortium that showcases the most exciting new drugs, devices and therapies, and includes the Epilepsy Shark Tank; and
  • -A professional advocacy network focused on increasing epilepsy government and military funding and initiatives at the federal, state and local levels.

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy, which affects nearly three million people in the United States and 65 million people worldwide.  This year, another 200,000 people in our country will be diagnosed with epilepsy. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.    

About the New Epilepsy Foundation
The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968.  The Foundation’s mission is to stop seizures, find cures and overcome the challenges created by epilepsy.

The Epilepsy Therapy Project was founded in 2002 by a group of parents, distinguished physicians, and researchers to support the commercialization of new therapies through direct grants and investments in promising academic and commercial projects. 

The new organization, known as the Epilepsy Foundation, will have unparalleled reach and leadership through a nationwide supportive care network, broad-based public awareness, education and focus on accelerating the clinical development of innovative therapies for people with epilepsy.

 

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Media Contacts:

Epilepsy Foundation
Kenneth Lowenberg
klowenberg@efa.org
301-918-3773

BCC Partners
Karen L. Bergman
kbergman@bccpartners.com

650-575-1509

 

 

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Epilepsy Foundation
8301 Professional Place
Landover MD 20785
Tel.: 1-800-332-1000
www.epilepsyfoundation.org