Useful links and other organizations
Below is a selection of links to useful organizations or those with content that might be of interest. Please feel free to browse these links, but note that Capabilities Partnership, Inc. takes no responsibility for the availability or the accuracy of content held on external sites. For more information, please see our Disclaimer.
These sites do not necessarily reflect the opinion of Capabilities Partnership, Inc.
NEW YORK STATE COMPREHENSIVE EPILEPSY CENTERS
Columbia Comprehensive Epilepsy Center
The Columbia Comprehensive Epilepsy Center (CCEC) in New York City, is dedicated to the care of people with epilepsy. The Center offers state-of-the-art medical and surgical treatment for the management of epilepsy in adults, adolescents and teens, and children. The Center’s goal is to help patients gain control of seizures and optimize their quality of life.
Cornell University Comprehensive Epilepsy Center
Widely acclaimed for pioneering achievements in research and clinical innovations, the Weill Cornell Comprehensive Epilepsy Center provides a multidisciplinary approach to the complex medical and social needs of patients with seizures.
Montefiore Hospital Comprehensive Epilepsy Center
Since 1991, the Epilepsy Center at The Children’s Hospital at Montefiore (CHAM) has gained an international reputation for offering expert clinical care supported by groundbreaking research into new treatment methods for epilepsy disorders and related neurological diseases. The New York state-designated facility offers the most advanced approaches to epilepsy in a caring, family-centered environment. It is a level 4 epilepsy center offering the full range of medical and surgical procedures for the treatment of epilepsy and related seizure disorders.
North East Regional Epilepsy Group
Offers unique services and comprehensive care to children and adults with epilepsy, using state-of-the-art diagnostic procedures and applying for the latest advances in medical and surgical treatment. In addition, its Life Links programs focus on the physical and mental well-being of persons with epilepsy by promoting education, accessibility to health care, peer communication, and a sense of community.
NYU Medical Center Comprehensive Epilepsy Center
NYU Comprehensive Epilepsy Center offers the most current surgical and medical options in the treatment of epilepsy. It is also involved in clinical research and basic science research to better understand the causes of epilepsy and to develop better treatments. Complementary management approaches such as diet alteration, lifestyle changes, and other complementary remedies are also considered a part of a comprehensive management plan.
Strong Memorial Hospital / Strong Epilepsy Center
The Strong Epilepsy Center was founded in 1989 by two members of the Seizure Unit of Boston Children’s Hospital. Part of the Harvard Medical School, the Seizure Unit was the first comprehensive epilepsy center in the United States. Dr. Erba was at the Seizure Unit for twenty-four years and Dr. Burchfiel was at the Seizure Unit for nineteen years.
EPILEPSY SERVICE PROVIDERS
The Epilepsy Association of Western New York
The mission of the Epilepsy Association of WNY, Inc. (EAWNY) is to assist individuals and their families in coping with and adjusting to epilepsy and seizure disorders to enable them to lead more independent, productive, and satisfying lives.
Epilepsy Foundation of Long Island
The Epilepsy Foundation of Long Island was founded in 1953 by a group of parents who were determined to see their children lead productive, satisfying lives. Today, the Foundation provides education, counseling, and residential care to Long Island residents with epilepsy, developmental disabilities, and related conditions.
Epilepsy Foundation of Northeastern New York, Inc.
The mission of the Epilepsy Foundation of Northeastern New York is to ensure people with seizures are able to participate in life experiences through services, education, advocacy, and research.
Epilepsy/Pralid Inc. in Rochester-Syracuse-Binghamton
Our Mission: Remove the stigma of epilepsy and help people with epilepsy and related disabilities reach their potential.
The Epilepsy Foundation of Metropolitan New York
This non-profit social service organization is dedicated to improving the quality of life of people with epilepsy and their families.
OTHER USEFUL LINKS
Bounce Out the Stigma
Here we teach kids to have good feelings about themselves. Our programs are never competitive but, always fun. Where other programs discourage, we encourage. Where other programs create peer pressure, we create peer support.
You Are Not Alone — CDC Toolkit for Parents of Teens With Epilepsy
You Are Not Alone is a toolkit developed specifically for parents of teens who have epilepsy.
The Dana Foundation
The Dana Foundation is a private philanthropic foundation with principal interests in brain science, immunology, and arts education.
Department of Health BRFSS Report—Epilepsy Among Adults in NYS
The latest report from the NYS Department of Health, indicating the prevalence and impact of epilepsy on the population of New York State
The mission of the Epilepsy Foundation is to ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy, and research.
FACES – Finding a Cure for Epilepsy & Seizures
Our mission is to improve the quality of life for all people affected by epilepsy through research, clinical programs, education and awareness, and community-building events.
Kids Health Site — for and about children and teens
KidsHealth provides advice on children’s health, behavior, and growth – from before birth through teen years.
Medic Alert Foundation
MedicAlert Foundation is a nonprofit organization providing 24-hour emergency medical information and identification service. If you have any medical condition that may put you at risk in an emergency, you may need MedicAlert Advantage. MedicAlert Advantage membership, for adults 18 and above, allows you to manage your emergency medical information record (EMIR®). We ensure your vital medical information is immediately known to emergency responders and will speak for you when you cannot.
National Institutes of Health
NIH is the steward of medical and behavioral research for the Nation. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.
Adult Career and Continuing Education Services-Vocational Rehabilitation (ACCES-VR) offers access to a full range of employment and independent living services that may be needed by persons with disabilities throughout their lives. Through its administration of vocational rehabilitation and independent living programs, VR coordinates policy and services relating to:
- transition services for students with disabilities from school to adult services
- vocational rehabilitation services for working-age individuals with disabilities
- independent living services for people with disabilities of all ages
- business services for hiring a qualified diverse workforce
NYS Office for People with Developmental Disabilities (OPWDD)
We help people with developmental disabilities live richer lives We help people with developmental disabilities enjoy meaningful relationships with friends, family, and others in their lives, experience personal health and growth and live in the home of their choice and fully participate in their communities.
OPWDD Safety Alerts
OPWDD has created and maintains a growing list of health and safety information specifically aimed at people with developmental disabilities.
Seizure Tracker Software
Free and easy-to-use online seizure tracking software. Create a secure individual account and enter your seizure activity and other information to generate useful reports.
ShopRite Partners In Caring
Shoprite Partners in Sharing is committed to helping feed and meet the nutritional needs of families and the elderly who may otherwise go without and to raise awareness of the plight of the hungry by involving our vendor partners, associates, and customers in the battle against hunger in the communities served by ShopRite stores.
Social Security Administration
The Social Security Administration’s mission is to advance the economic security of the nation’s people through compassionate and vigilant leadership in shaping and managing America’s Social Security programs.
Actor, Greg Grunberg, star of shows such as Heroes, Felicity, and Alias, and leader of Band From TV, unveils Talk About It. TalkAboutIt.org is a star-studded Web site created to educate the world about seizures and epilepsy on behalf of the 50 million people around the globe, who are coping with the condition, including his oldest son.