Epilepsy Foundation of Florida RECEIVES COMMUNITY IMPACT GRANT FROM NEW YORK LIFE

Miami, Florida, January 13, 2011 – Epilepsy Foundation of Florida announced today that it was awarded a $6,000.00 Community Impact Grant from New York Life Insurance Company to support their Cup Cake project.

“We are grateful for New York Life’s investment in this program, which will have a lasting effect on the entire community,” said Karen Egozi CFO of the Epilepsy Foundation, “New York Life’s ongoing service has directly benefited many people in Florida.”

“New York Life is proud to support Epilepsy Foundation of Florida in our community that is home to many agents and employees,” said Peter Busse of New York Life in the Miami field office. “It’s gratifying to be able to provide grants to local organizations that help meet the increasing needs of the community. New York Life strongly encourages our people to give their time and talents to help make a difference.”

The Community Impact Grant program, which began in 2008, awards grants of up to $25,000 to local nonprofit organizations which are supported by New York Life agents and employees and address the needs of the community. One hundred and twenty-eight grants totaling over $1.4 million have been awarded since the program’s inception.

New York Life Insurance Company, a Fortune 100 company founded in 1845, is the largest mutual life insurance company in the United States* and one of the largest life insurers in the world. New York Life has the highest possible financial strength ratings from all four of the major credit rating agencies. Headquartered in New York City, New York Life’s family of companies offers life insurance, retirement income, investments and long-term care insurance. New York Life Investments** provides institutional asset management and retirement plan services. Other New York Life affiliates provide an array of securities products and services, as well as institutional and retail mutual funds. Please visit New York Life’s web site at www.newyorklife.com for more information.

*New York Life is the largest mutual life insurance company based on the Fortune 500, ranked within industries, Insurance: Life, Health (Mutual), Fortune magazine, May 3, 2010.

**New York Life Investments is a service mark used by New York Life Investment Management Holdings LLC and its subsidiary, New York Life Investment Management LLC.

Camp Boggy CreekThis weekend, the Epilepsy Foundation of Florida (EFOF) proudly welcomed home children living with epilepsy after a week at Camp Boggy Creek in Eustis, Florida. “Due to the generous support of the communities in which we live and provide services, the Epilepsy Foundation of Florida raised enough funds to be able to provide 80 kids a life changing experience. For one week, July 15 to July 20, children with epilepsy were surrounded with children just like themselves but the focus wasn’t about living with a seizure disorder – the focus was fun, excitement, empowerment and fellowship. At Camp Boggy Creek, kids with epilepsy get to experience the joy of being just kids, they participate in activities just like anyone else at a summer camp, with hiking, horse-back riding, swimming, singing, boating and more” stated EFOF chief executive officer, Karen Basha Egozi.

 

 

Camp Boggy Creek“Camp is often the first time children with seizure disorders are on their own, giving them the opportunity to build independence. Playing and interacting with other kids who also have seizure disorders reduces the feelings of fear and isolation” added Ms. Basha Egozi. “These children have the opportunity to engage in activities that are often off-limits, but here they can build confidence in trying new things in an environment specifically designed for children with chronic or life-threatening illnesses.

 

Camp Boggy Creek

Not only does Camp Boggy Creek have the Patch, a state of the art medical facility on its grounds, the Patch is supported by highly qualified and committed medical volunteers. Pat Dean, M.S.N., ARNP, Clinical Coordinator of the Comprehensive Epilepsy Clinic at Miami Children’s Hospital, and immediate past Board President of EFOF, helped to establish a camp for kids with epilepsy in 1986 and she’s been a volunteer at epilepsy week at Boggy Creek since its inception. On her role with the camp, Pat Dean stated, “I’ve always viewed my responsibility to people with epilepsy as extending far beyond the walls of the hospital that I worked in. My responsibility is to help them achieve the highest quality of life in whatever way it takes to do it. Year after year at Camp Boggy Creek, I’ve seen how transformative this experience can be for kids with epilepsy and for their parents. Early in the week, one camper had a seizure in front of other campers and was embarrassed to re-join the group. We took the camper aside and said, “Do you realize that every single camper here has seizures too?” It dawned on the young camper, probably for the very first time, that she was far from alone in her experience, that there were other kids exactly like her and she was surrounded by them. That’s an experience unique to Camp Boggy Creek but is no doubt replicated many times during every epilepsy week, each and every year.”

 

Camp Boggy CreekIn addition to the week for kids with epilepsy, Camp Boggy Creek offers a Fall Family Retreat Weekend from October 26 to October 28 where 32 campers and their entire families can enjoy all the camp has to offer while also finding support among other families contending with similar medical and emotional challenges. Interested families should call the Foundation at 305-670-4949 for more information. EFOF conducts fundraising activities throughout the year to send children and their families to Camp Boggy Creek.

 

Camp Boggy CreekCamp Boggy Creek is a permanent, year-round facility where children, ages 7–16, with chronic or life-threatening illnesses can come at no charge to them or their families. The Mission of Camp Boggy Creek is to enrich the lives of children who have chronic or life threatening illnesses by creating camping experiences that are memorable, exciting, fun, empowering, physically safe and medically sound. At camp, children can enjoy swimming, boating, fishing, arts and crafts, horseback riding, theater, archery, singing, and dancing in specifically equipped facilities. Camp Boggy Creek is a proud member of The Association of Hole in the Wall Camps. To learn more visit www.boggycreek.org.

 

Transportation can present a daily challenge for people with epilepsy. People with epilepsy may not be able to drive or may have restricted licenses, making it difficult getting to necessary places. Not driving may limit the ability to work or attend school, to socialize or participate in community events, or get to medical or other important appointments. While public transportation may be an option for some, it may not be an appropriate or accessible option for others. Below are various transportation options:

PUBLIC TRANSPORTATION

Availability of public transportation and related assistance varies by county. For example, in Miami Dade, you can visit www.miamidade.gov/transit/fares_golden.asp to see what initiatives are available for people with disabilities.

PARATRANSIT SERVICES

As noted above, public transportation may not always be accessible or appropriate for people with seizure disorders. For people with frequent seizures, it may be dangerous to wait for regular bus services at busy intersections where they may encounter danger during a seizure. Paratransit services are transportation services for people who cannot use the regular public transportation bus services. These services may pick people up at their homes or at specific locations. Paratransit services may be available for people who meet one of the following requirements:

* You cannot get on, ride on, or get off a regular bus because of your disability even when the bus is accessible; or

* You have a disability and can't use the regular bus system; or

* Your impairment prevents you from traveling to or from a bus stop.

 

To find out about paratransit services, contact the county transit authority where you live. When applying, people should specifically describe their disability or impairment in detail and explain why their condition prevents them from using the regular bus system. Notes from doctors may be helpful to support the information provided in the application. For example, in Miami-Dade, you can visit www.miamidade.gov/transit/rider_sts.asp to learn more about the Special Transportation Service.

DRIVING

Can you drive an automobile if you have epilepsy? Yes, if your seizures are controlled with treatment and you meet the licensing requirements in your state. Every state regulates the driver's license eligibility of persons with certain medical conditions. The most common requirement for people with epilepsy is that they be seizure free for a specified period of time and submit a physician's evaluation of their ability to drive safely. Another common requirement is the periodic submission of medical reports, in some states for a specified period of time and in others for as long as the person remains licensed. Click on the link below to read the requirements and information regarding driving in Florida or any other state. http://www.epilepsyfoundation.org/resources/drivingandtravel.cfm

John Hanes, a senior at Lake Worth High School, Medical Science Academy, is this year’s Florida “Ambassador” at the Kids Speak Up! event that will take place in Washington, D.C., April 1-3, 2012. Kids Speak Up! is a national program, sponsored by the national Epilepsy Foundation. John will represent the Epilepsy Foundation of Florida (EFOF) and be one of nearly 50 youth with epilepsy selected from across the country to petition congressional leaders for better access to care, improved public education and more research toward a cure for epilepsy.

The EF, a national nonprofit with affiliated organizations like EFOF throughout the United States, has led the fight against epilepsy since 1967. The organizations’ goals are to ensure that people with seizures are able to participate in all life experiences; improve how people with epilepsy are perceived, accepted and valued in society; and promote research for a cure.

John will be trained to become a national and local advocate on behalf of the nearly 3 million people with epilepsy in the United States. The three-day event includes training sessions and seminars that educate participants about epilepsy and help them develop their public speaking skills. “What an amazing opportunity and I get to sharpen my speaking skills” Hanes remarks. (John is the Vice President of the Lake Worth High School debate team and will be participating in the state debate this year).

As a Kids Speak Up! participant, John has committed to a Year of Service as an active epilepsy advocate helping other kids and families to understand epilepsy and advocating for policies that support people with epilepsy. I had my first seizure in the middle of an airport in a third world country,” recalled Hanes. “I am grateful for the support my family and I have received from the Epilepsy Foundation of Florida,” Hanes said. “And, I want to give back to the community.”

“I am honored to serve as an ambassador for those with epilepsy here in Florida,” he said. “While epilepsy knows no boundaries, few states are as vulnerable to epilepsy as Florida, where 375,000 Floridians are affected by epilepsy.” Statistically, epilepsy is most likely to affect children and seniors, both which constitute large percentages of our state’s population.

And, despite its prevalence and economic burden on the nation’s health care costs, over $15.5 billion in treatment, resources and lost productivity at work, school and home, funding for research is lower than for many less common medical conditions.

John Hanes, a senior at Lake Worth High School, Medical Science Academy and Vice President of the Wellington Teen debate team, served as Florida “Ambassador” to the annual Kids Speak Up! conference sponsored by the Epilepsy Foundation of America that took place in Washington, D.C., April 1-3, 2012. As one of nearly 50 youth with epilepsy from across the United States, John represented the Epilepsy Foundation of Florida and met with several of Florida’s congressional offices to advocate for better access to care, improved public education and more research toward a cure for epilepsy.

The Epilepsy Foundation of America is a national nonprofit with affiliated organizations like the Epilepsy Foundation of Florida throughout the United State, that leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy since 1967. The organizations’ goals are to ensure that people with seizures are able to participate in all life experiences; improve how people with epilepsy are perceived, accepted and valued in society; and promote research for a cure.

“We are most grateful for John’s advocacy on behalf of so many people and their families impacted by this disorder. His trip to the Capitol came at a particularly auspicious time; the Institute of Medicine just released a report showing the broad reach of this condition, stating that 1 in 26 people will develop epilepsy in their lifetime. John’s engagement, commitment and passion are making a difference” said Karen Basha Egozi, the Chief Executive Officer of the Epilepsy Foundation of Florida.

“It was a great experience, being able to educate our policy makers about epilepsy, the needs of the community and the difference that can be made with federal funding,” said John. “I want to encourage anyone impacted by epilepsy in any way to join me in speaking out by asking their members of Congress to cosponsor H. Res. 298, the RAISE Resolution (Raising Awareness and Insight into Seizures and Epilepsy). There are 375,000 Floridians living with epilepsy; together, if we speak up and speak out, we can make a positive difference.”

While in Washington D.C., John was trained to become a national and local advocate on behalf of the nearly 3 million people with epilepsy in the United States. The three-day event included training sessions and seminars that educated participants about epilepsy and helped them develop their public speaking skills. As Florida’s “Ambassador”, John has committed to a Year of Service as an active epilepsy advocate helping other kids and families to understand epilepsy and advocating for policies that support people with epilepsy. I had my first seizure in the middle of an airport in a third world country,” recalled Hanes. “I am grateful for the support my family and I have received from the Epilepsy Foundation of Florida,” Hanes said. “And, I want to give back to the community.”