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Assistance Directory: Where to go for more information on the topics discussed in this issue of Neurology Now and for a directory of patient advocacy organizations.
Neurology Now
October-november 2012
Volume 8(5)
p 36–39
For a full listing of patient organizations, go to neurologynow.com
HELP FOR ALL NEUROLOGIC DISORDERS
American Academy of Neurology Web site aan.com/patients 1-800-879-1960
American Brain Foundation CureBrainDisease.org 1-800-879-1960
CaringBridge® (Free, personalized Web sites to support your health journey) Caringbridge.org 651-452-7940
National Institute of Neurological Disorders and Stroke ninds.nih.gov
Well Spouse Association wellspouse.org 1-800-838-0879
ALZHEIMER'S DISEASE
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
Association for Frontotemporal Degeneration theaftd.org 1-866-507-7222
Cognitive Dynamics cognitivedynamics.org 205-759-1585
ATAXIA
National Ataxia Foundation ataxia.org 763-553-0020
AUTISM
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
BRAIN TUMOR
American Brain Tumor Association abta.org 1-800-934-2873
National Brain Tumor Society braintumor.org 1-800-934-2873
CHIARI MALFORMATION AND SYRINGOMYELIA
American Syringomyelia and Chiari Alliance Project asap.org 1-903-236-7079 1-800-ASAP-282 (272-7282)
Chiari and Syringomyelia Foundation csfinfo.org 1-718-966-2593
DYSTONIA
American Dystonia Society 310-237-5478 dystonia.us
Dystonia Foundation dystonia-foundation.org 1-800-377-DYST (1-800-377-3978)
Spasmodic Torticollis spasmodictorticollis.org 1-888-445-4588
EPILEPSY AND SEIZURES
Citizens United for Research in Epilepsy (CURE) CUREepilepsy.org 312-255-1801
Epilepsy Foundation epilepsyfoundation.org 1-800-332-1000
Epilepsy Therapy Project epilepsy.com/epilepsy_therapy_project 540-687-8077
SeizureTracker SeizureTracker.com , info@seizuretracker.com
HEADACHE/MIGRAINE
American Headache Society Committee for Headache Education (ACHE) achenet.org 856-423-0043
Migraine Research Foundation migraineresearchfoundation.org 212-249-5402
National Headache Foundation headaches.org 888-NHF-5552 (888-643-5552)
HUNTINGTON'S DISEASE
Hereditary Disease Foundation hdfoundation.org 212-928-2121
Huntington's Disease Society of America hdsa.org 1-800-345-HDSA (1-800-345-4372)
Huntington's Disease Youth Organization hdyo.org
HYDROCEPHALUS
Hydrocephalus Association hydroassoc.org 1-888-598-3789
INFECTIOUS DISEASE
Encephalitis Global encephalitisglobal.org
MULTIPLE SCLEROSIS
MSFriends msfriends.org 1-877-MSFRIENDS
MSWorld msworld.org
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
Myasthenia Gravis Alliance MGdirect.org 1-800-643-0808
Myasthenia Gravis Foundation of America myasthenia.org 1-800-541-5454
NEUROMUSCULAR DISEASES
ALS Association alsa.org 1-800-782-4747
Charcot-Marie-Tooth Association charcot-marie-tooth.org 610-499-9264, 1-800-606-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
PAIN
American Pain Foundation painfoundation.org 1-888-615-PAIN (7246)
PARKINSON'S DISEASE & MOVEMENT DISORDERS
American Parkinson Disease Association apdaparkinson.org 1-800-223-2732
Foundation for PSP, CBD and Related Brain Diseases curepsp.org 1-800-457-4777
International Essential Tremor Foundation essentialtremor.org 1-888-387-3667
The Michael J. Fox Foundation for Parkinson's Research michaeljfox.org 1-800-708-7644
Lewy Body Dementia Association lbda.org 404-935-6444
National Parkinson Foundation parkinson.org 1-800-327-4545
Parkinson's Disease Foundation pdf.org 1-800-457-6676
Tremor Action Network tremoraction.org 510-681-6565
WE MOVE wemove.org 212-875-8312
RARE DISEASES
The Children's Rare Disease Network crdnetwork.org 1-949-248-7273
The National Institutes of Health Office of Rare Diseases Research rarediseases.info.nih.gov 1-301-402-4336
National Organization for Rare Disorders rarediseases.org 1-203-744-0100, 1-800-999-NORD (6673)
SLEEP
National Sleep Foundation sleepfoundation.org 703-243-1697
STROKE
American Stroke Association strokeassociation.org 1-888-4STROKE (478-7653)
National Aphasia Association aphasia.org 1-800-922-4622
National Stroke Association stroke.org 1-800-STROKES (787-6537)
TOURETTE SYNDROME
Tourette Syndrome Association tsa-usa.org 718-224-2999
TRANSVERSE MYELITIS
International Disability Coalition disabilitycoalition.org
Transverse Myelitis Network transversemyelitis.ning.com
Transverse Myelitis Association Myelitis.org 614-766-1806
TRAUMA
Brain Injury Association of America biausa.org 1-800-444-6443
Brain Trauma Foundation braintrauma.org 1-212-772-0608
TRIGEMINAL NEURALGIA
The Facial Pain Association fpa-support.org 1-800-923-3608
Living with TN livingwithtn.org