720-690-1423 DementiaCC@gmail.com

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