Resources
Dementia Connections Coalition Re-defining Dementia.
RESOURCES
American Academy of Neurology
Website: aan.com/patients
1-800-879-1960
American Brain Foundation
Website: AmericanBrainFoundation.org
1-800-879-1960
National Institute of Neurological Disorders and Stroke
Website: ninds.nih.gov
Well Spouse Association
Website: wellspouse.org
1-800-838-0879
ALZHEIMER’S RESOURCES
Alzheimer’s Association
Website: alz.org
1-800-272-3900
Alzheimer’s Disease Education and Referral Center (ADEAR)
Website: nia.nih.gov/alzheimers
1-800-438-4380
Alzheimer’s Foundation of America
Website: alzfdn.org
1-866-232-8484
FRONTALTEMPORAL DEMENTIA
Association for Frontotemporal Degeneration
Website: theaftd.org
1-866-507-7222
ATAXIA
National Ataxia Foundation
Website: ataxia.org
763-553-0020
AUTISM
Autism Society of America
Website: autism-society.org
1-800-3AUTISM (1-800-328-8476)
Autism Speaks, Inc.
Website: autismspeaks.org
212-252-8584
ASPERGER’S SYNDROME
Global and Regional Asperger Syndrome Partnership
Website: grasp.org
1-888-474-7277
BRAIN TUMOR
American Brain Tumor Association
Website: abta.org
1-800-934-2873
Brain Tumor Foundation
Website: braintumorfoundation.org
212-265-2401
National Brain Tumor Society
Website: braintumor.org
1-800-934-2873
CEREBRAL PALSY
United Cerebral Palsy
Website: ucp.org
1-800-872-5827
CHIARI MALFORMATION AND SYRINGOMYELIA
American Syringomyelia and Chiari Alliance Project
Website: asap.org
1-903-236-7079
1-800-ASAP-282 (272-7282)
Chiari and Syringomyelia Foundation
Website: csfinfo.org
1-718-966-2593
Cognitive Dynamics
Website: cognitivedynamics.org
205-759-1585
DEPRESSION AND MENTAL DISORDERS
National Alliance on Mental Illness
Website: nami.org
1-800-950-NAMI (6264)
DYSTONIA
American Dystonia Society
Website: DystoniaSociety.org
310-237-5478
Dystonia Foundation
Website: dystonia-foundation.org
1-800-377-DYST (1-800-377-3978)
Spasmodic Torticollis
Website: SpasmodicTorticollis.org
1-888-445-4588
EPILEPSY AND SEIZURES
Citizens United for Research in Epilepsy (CURE)
Website: CUREepilepsy.org
312-255-1801
Epilepsy Foundation
Website: epilepsy.org
1-800-332-1000
Living Well With Epilepsy
Website: LivingWellWithEpilepsy.com
SeizureTracker
Website: SeizureTracker.com
HEADACHE / MIGRAINE
American Migraine Foundation
Website: AmericanMigraineFoundation.org
856-423-0043
Migraine Research Foundation
Website: migraineresearchfoundation.org
212-249-5402
National Headache Foundation
Website: headaches.org
888-NHF-5552 (888-643-5552)
HUNTINGTON’S DISEASE
Hereditary Disease Foundation
Website: hdfoundation.org
212-928-2121
Huntington’s Disease Society of America
Website: hdsa.org
1-800-345-HDSA (1-800-345-4372)
Huntington’s Disease Youth Organization
Website: hdyo.org
HYDROCEPHALUS
Hydrocephalus Association
Website: hydroassoc.org
1-888-598-3789
National Hydrocephalus Foundation
Website: nhfonline.org
1-888-857-3434
INTERNATIONAL RESOURCES
Dementia Alliance International
Website: DementiaAllianceInternational.org
Alzheimer’s Society, UK
Website: alzheimers.org.uk
Dementia Care International, AU
Website: DementiacareInternational.com
Younger Onset Dementia, AU
Website: YoungerOnset.net/
Alzheimer’s Disease International – I Can, I Will
Website: icaniwill.alz.co.uk/icaniwill.html
LEWY BODY’S
Lewy Body Dementia Association
Website: lbda.org
404-935-6444
MULTIPLE SCLEROSIS
MSWorld
Website: msworld.org
Multiple Sclerosis Foundation
Website: msfocus.org
1-800-225-6495
National Multiple Sclerosis Society
Website: NationalMSSociety.org
1-800-FIGHT-MS (1-800-344-4867)
MYASTHENIA GRAVIS
Myasthenia Gravis Foundation of America
Website: myasthenia.org
1-800-541-5454
NEUROMUSCULAR DISEASES
ALS Association
Website: alsa.org
1-800-782-4747
CMTA – Charcot-Marie-Tooth Association
Website: cmtausa.org/
610-499-9264
1-800-606-CMTA (2682)
Foundation for Peripheral Neuropathy
Website: FoundationForPN.org/
212-692-0662
Hereditary Neuropathy Foundation
Website: hnf-cure.org
212-722-8396; 855-HELPCMT (435-7268)
Kennedy’s Disease Association
Website: kennedysdisease.org
559-658-5950
Moebius Syndrome Foundation
Website: MoebiusSyndrome.com
1-660-834-3406
Muscular Dystrophy Association
Website: mda.org
1-800-FIGHT-MD (1-800-344-4863)
Spastic Paraplegia Foundation, Inc.
Website: sp-foundationorg.presencehost.net/
1-877-773-4483
PAIN
American Chronic Pain Association
Website: theacpa.org
1-800-533-3231
PARKINSON’S DISEASE & MOVEMENT DISORDERS
American Parkinson Disease Association
Website: apdaparkinson.org
1-800-223-2732
Cure PSP
Website: psp.org/
1-800-457-4777
International Essential Tremor Foundation
Website: EssentialTremor.org
1-888-387-3667
PARKINSON DISEASE
The Michael J. Fox Foundation for Parkinson’s Research
Website: michaeljfox.org
1-800-708-7644
National Parkinson Foundation
Website: Parkinson.org
1-800-327-4545
The Parkinson’s Institute and Clinical Center
Website: thepi.org
1-800-655-2273
Tremor Action Network
Website: TremorAction.org
510-681-6565
SLEEP
National Sleep Foundation
Website: SleepFoundation.org
703-243-1697
STROKE
American Stroke Association
Website: StrokeAssociation.org
1-888-4STROKE (478-7653)
National Aphasia Association
Website: aphasia.org
1-800-922-4622
National Stroke Association
Website: stroke.org
1-800-STROKES (787-6537)
TOURETTE SYNDROME
Tourette Association of American
Website: Tourette.org/
718-224-2999
TRANSVERSE MYELITIS
Transverse Myelitis Association
Website: Myelitis.org
614-766-1806
TRAUMA
Brain Injury Association of America
Website: biausa.org
1-800-444-6443
Brain Trauma Foundation
Website: BrainTrauma.org
1-212-772-0608
TRIGEMINAL NEURALGIA
The Facial Pain Association
Website: fpa-support.org
1-800-923-3608
Living with Facial Pain
Website: LivingWithFacialPain.org/
VASCULAR DEMENTIA – also see “Stroke”
Journal American Heart Association
“Connecting Cardiovascular Disease and Dementia: Further Evidence”
Article Link – CLICK HERE
Website: jaha.ahajournals.org/
PRESCRIBED DRUG TREATMENTS
Alzheimer’s Disease International
“There is an immense amount of research taking place into new drug treatments for Alzheimer’s disease and the other dementias …”
Article – CLICK HERE
Website: alz.co.uk/
CARE PARTNER RESOURCES
Family Caregiver Alliance – “The Stresses of Caregiving” – 2003
Article – CLICK HERE
Website: caregiver.org
