Most insurers will pay for implantation of the VNS for intractable epilepsy, including Medicare and Medicaid. Because insurance companies may have different requirements, people interested in the VNS should inquire directly with their insurance provider. In addition, the VNS Therapy Access Program, sponsored by Cyberonics (cyberonics.com ; 888-867-7846) provides information and assistance regarding insurance such as prior authorizations, letters of medical necessity, additional information about VNS, and assistance with appeals and denials. A nurse case manager can be reached at 877-610-1180.
If you are interested in participating in a clinical trial, discuss this possibility with your neurologist. One study, currently recruiting patients at Dartmouth Hitchcock Medical Center, in Lebanon, NH, and University Hospital, in Ghent, Belgium, is trying to determine which electrical stimulation settings of amperage, duration, and frequency are best for seizure control. The study is recruiting people with at least one seizure a month with alteration of consciousness, taking at least one antiepileptic drug, and who are 16 years or older. More complete information regarding this study (NCT00782249) is available at clinicaltrials.gov .
Cyberonics is sponsoring a health outcomes study to evaluate the effect of the VNS on quality of life as measured by the Quality of Life in Epilepsy (QOLIE-89) questionnaire, as well as seizure control and adverse events. This study is open to patients 16 years or older with intractable epilepsy. People interested in this study should contact Cyberonics regarding clinical trial NCT00522418.
Financial assistance to travel to an epilepsy center that can provide the VNS may be available from the Epilepsy Foundation. For more information, contact the Epilepsy Foundation national office at 800-470-1655, x3726.
The Alzheimer's Association and Alzheimer's Foundation of America (see next column) provide information for Alzheimer's disease patients and caregivers.
Elder Rage, elderrage.com/Links.asp , Alzheimer's resources from caregiver, advocate Jacqueline Marcell.
American Stroke Association, strokeassociation.org , For general stroke info.
National Association of Area Agencies, on Aging, n4a.org , This organization helps older people who have, disabilities to live at home.
National Institute on Aging: Alzheimer's, Disease Education & Referral Center, nia.nih.gov/alzheimers
National Stroke Association, stroke.org , For general stroke info.
Veterans-Express, veterans-express.com , This organization helps seniors and, veterans with benefits and assisted living.
Well Spouse Association, wellspouse.org , This nonprofit supports and educates, spousal caregivers.
For a full listing of patient organizations, go to neurologynow.com
American Academy of, Neurology Foundation, aan.com/go/foundation , 1-800-879-1960
The Brain Matters.org , AAN patient website, thebrainmatters.org
National Institute of Neurological, Disorders and Stroke, ninds.nih.gov
Alzheimer's Association, alz.org , 1-800-272-3900
Alzheimer's Disease Education, and Referral Center, alzheimers.org , 1-800-438-4380
Alzheimer's Foundation of America, alzfdn.org , 1-866-232-8484
Autism Society of America, autism-society.org , 1-800-3AUTISM (1-800-328-8476)
Autism Speaks, Inc., autismspeaks.org , 212-252-8584
Global and Regional Asperger, Syndrome Partnership, grasp.org , 1-888-474-7277
American Brain Tumor Association, abta.org , 800-886-2282
Children's Brain Tumor Foundation, cbtf.org , 1-866-CBT-HOPE (228-4673)
National Brain Tumor Society, Braintumor.org , 1-800-934-2873
United Cerebral Palsy, ucp.org , 1-800-872-5827
Benign Essential Blepharospasm, Research Foundation, blepharospasm.org , 409-832-0788
Dystonia Foundation, dystonia-foundation.org , 1-800-377-DYST (1-800-377-3978)
National Spasmodic Dysphonia, Association, dysphonia.org , 1-800-795-6732
Spasmodic Torticollis, spasmodictorticollis.org , 1-888-445-4588
Citizens United for Research, in Epilepsy (CURE), CUREepilepsy.org , 312-255-1801
Epilepsy Foundation, epilepsyfoundation.org , 1-800-332-1000
National Headache Foundation, headaches.org , 1-888-NHF-5552 (1-888-643-5552)
Migraine Research Foundation, migraineresearchfoundation.org , 212-249-5402
Hereditary Disease Foundation, hdfoundation.org , 212-928-2121
Huntington's Disease Society of America, hdsa.org , 1-800-345-HDSA (1-800-345-4372)
Children's Hydrocephalus Support Group, hydrosupport.org , 425-482-0479
Hydrocephalus Association, hydroassoc.org , 1-888-598-3789
National Hydrocephalus Foundation, nhfonline.org , 1-888-857-3434
MSFriends, msfriends.org , 1-877-MSFRIENDS
Multiple Sclerosis Association of America, msassociation.org , 1-800-532-7667
Multiple Sclerosis Foundation, msfocus.org , 1-800-225-6495
National Multiple Sclerosis Society, nationalmssociety.org , 1-800-FIGHT-MS (1-800-344-4867)
Myasthenia Gravis Foundation of America, myasthenia.org , 1-800-541-5454
ALS Association, alsa.org , 1-800-782-4747
Charcot-Marie-Tooth Association, charcot-marie-tooth.org , 610-499-92641-800-606-CMTA (2682)
Kennedy's Disease Association, kennedysdisease.org , 559-658-5950
Moebius Syndrome Foundation, moebiussyndrome.com , 1-660-834-3406
Muscular Dystrophy Association, mda.org , 1-800-FIGHT-MD (1-800-344-4863)
Neuropathy Association, neuropathy.org , 212-692-0662
Spastic Paraplegia Foundation, Inc., sp-foundation.org , 1-877-773-4483
American Pain Foundation, painfoundation.org , 1-888-615-PAIN (1-888-615-7246)
National Foundation for the, Treatment of Pain, paincare.org , 713-862-9332
American Parkinson Disease Association, apdaparkinson.org , 1-800-223-2732
International Essential Tremor Foundation, essentialtremor.org , 1-888-387-3667
Lewy Body Dementia Association, lbda.org
Michael J. Fox Foundation, for Parkinson's Research, michaeljfox.org , 1-800-708-7644
National Ataxia Foundation, ataxia.org , 763-553-0020
National Parkinson Foundation, parkinson.org , 1-800-327-4545
Parkinson's Disease Foundation, pdf.org , 1-800-457-6676
Society for Progressive, Supranuclear Palsy, curepsp.org , 1-800-457-4777
WE MOVE (Worldwide Education &, Awareness for Movement Disorders), wemove.org , 212-875-8312
National Sleep Foundation, sleepfoundation.org , 202-347-3471
American Stroke Association, strokeassociation.org , 1-888-4-STROKE (1-888-478-7653)
Give Me Five For, Strokegiveme5forstroke.org
National Aphasia Association, aphasia.org , 1-800-922-4622
National Stroke Association, stroke.org , 1-800-787-6537
Tourette Syndrome Association, tsa-usa.org , 718-224-2999
Brain Injury Association of, Americabiausa.org , 1-800-444-6443
Brain Trauma Foundation, braintrauma.org , 212-772-0608
For people living with epilepsy, art can be a self-expressive, visual demonstration of how it feels to live with this serious neurological condition.
Expressions of Courage® is a national contest for people with epilepsy. The contest will be open for entries from May 11, 2009, through August 28, 2009. A panel of epilepsy advocates, art industry representatives, and healthcare experts will serve as contest judges and announce the winning artwork in November. Entries are judged based on creativity and the ability to bring to life the experiences of living with epilepsy.
Artwork may be created in ink, pencil, crayon, paint, or a combination of these materials, and must be on paper or board no larger than 8 by 11 inches. Contest entries will be categorized into three age groups: children ages 12 years old and younger; teens ages 13 to 17; and adults 18 years of age and older. Multiple submissions will be accepted.
Winners will be highlighted on the Expressions of Courage® Web site. A few winning pieces will also be chosen by curators from the Society for the Arts in Healthcare for display in a traveling art exhibition comprised of more than 20 winning entries from the past seven contests. Please send original artwork and a completed entry form to:
Expressions of Courage®, 389 Pittstown Road, Pittstown, NJ 08867
To download the Expressions of Courage® entry form and review the rules and regulations, go to expressionsofcourage.com/rules/rules.html or call the Contest Help Line at 800-224-4935 with questions.
Expressions of Courage® is a program developed and funded by Ortho-McNeil Neurologics®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, in partnership with the Epilepsy Foundation.