RESOURCE CENTRAL

Neurology Now
November/December 2009
Volume 5(6)
p 37–39
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Other Dementias, Other Resources

→“Dementia With Lewy Bodies,” by Bradley Boeve, M.D., available free for download from the Lewy Body Dementia Association, Inc. (lbda.org)

Living With Lewy's: Empowering Today's Dementia Caregiver, written by and for caregivers, and edited by Amy J. Throop and Gerald S. Throop.

→Neurologynow.com : Go to our Web site and search for “dementia.”

The 36-Hour Day: A Family Guide to Caring for People with Alzheimer's Disease, Other Dementias, and Memory Loss in Later Life (4th edition), by Nancy L. Mace, MA, and Peter V. Rabins, M.D., M.P.H.

→TheBrainMatters.org : The patient portion of the American Academy of Neurology Web site; search for “dementia.”

What if It's Not Alzheimer's? A Caregiver's Guide to Dementia, edited by Lisa Radin and Gary Radin. Contains information about frontotemporal dementia.

Related Clinical Trials

Although a cure for dementia remains a distant hope, research into Alzheimer's disease has produced medications that treat symptoms, and clinical trials are underway to see if those medications affect other dementias as well.

LEWY BODY DEMENTIA (LBD)

→Two studies are investigating donepezil as a treatment for memory problems in people with LBD.

→One study is investigating the effectiveness of another Alzheimer's drug, memantine, for the treatment of dementia associated with both Parkinson's disease and LBD.

→One study is investigating the effectiveness of ramelteon, a sleep aid, on quelling the agitation of rapid eye movement (REM) behavior disorder, or RBD, a sleep disorder common among people with Parkinson's disease and LBD.

→For more information on these trials, go to clinicaltrials.gov and search for “Lewy body disease.”

→Two studies are investigating the effectiveness of memantine for the treatment of FTD.

→One study is investigating tolcapone, a drug given to people with Parkinson's disease to increase the amount of dopamine in their brain, to see if it helps people with FTD.

→For more information on these trials, go to clinicaltrials.gov and search for “frontotemporal dementia.”

→One study is investigating whether donezepil, a drug that alleviates memory problems in people with Alzheimer's patients, may also help people with vascular dementia to perform tasks of daily living.

→For more information on these trials, go to clinicaltrials.gov and search for “vascular dementia.”

Assistance Directory

For a full listing of patient organizations, go to neurologynow.com

HELP FOR ALL NEUROLOGICAL DISORDERS

American Academy of Neurology Foundation aan.com/go/foundation

1-800-879-1960

TheBrainMatters.org AAN patient website thebrainmatters.org

National Institute of Neurological Disorders and Stroke ninds.nih.gov

ALZHEIMER'S/DEMENTIA

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 Dementias FTD-Picks.org

1-866-507-7222

Lewy Body Dementia Association LewyBodyDementia.org

1-800-539-9767

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

800-886-2282

National Brain Tumor Society Braintumor.org

1-800-934-2873

CEREBRAL PALSY

United Cerebral Palsy ucp.org

1-800-872-5827

DYSTONIA

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

EPILEPSY AND SEIZURES

Citizens United for Research in Epilepsy (CURE) CUREepilepsy.org

312-255-1801

Epilepsy Foundation epilepsyfoundation.org

1-800-332-1000

HEADACHE/MIGRAINE

National Headache Foundation headaches.org

1-888-NHF-5552 (1-888-643-5552)

Migraine Research Foundation migraineresearchfoundation.org

212-249-5402

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)

HYDROCEPHALUS

Hydrocephalus Association hydroassoc.org

1-888-598-3789

National Hydrocephalus Foundation nhfonline.org

1-888-857-3434

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 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 (1-888-615-7246)

PARKINSON'S DISEASE & MOVEMENT DISORDERS

American Parkinson Disease Association apdaparkinson.org

1-800-223-2732

International Essential Tremor Foundation essentialtremor.org

1-888-387-3667

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

SLEEP

National Sleep Foundation sleepfoundation.org

202-347-3471

STROKE

American Stroke Association strokeassociation.org

1-888-4-STROKE (1-888-478-7653)

Give Me Five For Stroke giveme5forstroke.org

National Stroke Association stroke.org

1-800-787-6537

TOURETTE SYNDROME

Tourette Syndrome Association tsa-usa.org

718-224-2999

TRAUMA

Brain Injury Association of America biausa.org

1-800-444-6443

Brain Trauma Foundationb raintrauma.org

212-772-0608

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