PD Links
Sarasota
Negroski, Stein, Sutherland & Hanes Neurology
www.myfloridaneuro.com
Board-certified neurologists with more than forty years of cumulative experience in the diagnosis and treatment of neurological disorders including Parkinson Disease, Multiple Sclerosis, Stroke and more, ensuring that the care you receive will be state of the art and designed with you in mind.
Sarasota Memorial Hospital Health Care System
www.smh.com
Local hospital featuring a certified stroke center. Voted one of “America’s Best Hospitals – 2007” by US News & World Report.
Healthplex
www.sarasotahealthplex.com
Information about the state-of-the art medically-oriented fitness center located just downstairs from the Southeastern Center.
National Organizations
The Michael J. Fox Foundation for Parkinson’s Research
www.michaeljfox.org
National information and research on Parkinson Disease. The Michael J. Fox Foundation for Parkinson’s Research is dedicated to spending funds it raises for research in a way that will best deliver on the Foundation’s mission: to secure truly effective treatments and a cure of Parkinson’s on the fastest track possible, at least within the decade.
Church Street Station
P.O. Box 780
New York, NY 10008-0780
T: 800-708-7644 or 212-509-0995
F: 212-213-3523
Parkinson’s Disease Foundation
www.pdf.org
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, patient education and public advocacy. PDF is working for the nearly one million people in the U.S. living with Parkinson’s by funding promising scientific research and supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded more than $50 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world.
1359 Broadway
Suite 1509
New York, NY 10018
T: 800-457-6676 or 212-923-4700
F: 212-923-4778
Email: info@pdf.org
National Parkinson Foundation, Inc.
www.parkinson.org
National Parkinson Foundation seeks to help find the cause and the cure for Parkinson’s disease and related neurodegenerative disorders. The NPF helps educate patients, caregivers, and the general public as well as provides some diagnostic and therapeutic services.
1501 N.W. 9th Avenue
Miami, FL 33136
T: 800-327-4545
F: 305-243-4403
Email: mailbox@npf.med.miami.edu
McKnight Brain Institute of the University of Florida
www.mbi.ufl.edu/research
The Parkinson’s Action Network
www.parkinsonsaction.org
The Parkinson’s Action Network is the unified voice of the Parkinson’s disease community, advocating for more than one million Americans and their families.
WE MOVE
www.wemove.org
Worldwide Education and Awareness for Movement Disorders is a non-profit organization whose primary mission is to increase awareness of movement disorders among healthcare professionals and the public. The site provides information on movement disorders and treatment options.
More Ways to Connect
The Parkinson’s Web
www.pdweb.mgh.harvard.edu
Provides links to PD organizations, treatment, and research centers.
The Parkinson’s Disease Information Exchange Network Online
www.parkinsons-information-exchange-network-online.com
Provides a searchable database of online articles and links to other online resources.
American Parkinson Disease Association, Inc
www.apdaparkinson.org
Provides information on PD and on the APDA’s services and activities. Provides listings of APDA Information and Referral Centers throughout the US, as well as available literature.
PD Blogger
www.pdblogger.com
PDBlogger is an English and Spanish information website.
PD Plan4Life
www.pdplan4life.com
Part personal journal, part informational, PD Plan4Life is a vehicle for sharing individual challenges with and triumphs over Parkinson’s, as well as “secret weapons” exercise, participation in clinical trials, and advocacy.
News Sources
Medical News Today
www.medicalnewstoday.com
Searchable information for Parkinson patients and caregivers.
More Sources
Genetic Testing
www.23andme.com
Testing service to determine whether a genetic predisposition for PD exists.
Life in Motion
www.life-in-motion.org
Information about moveme
Clognition
www.clognition.org
Addresses the motor symptoms that tend to do the most harm to quality of life.
Parkinson Pipeline Project
www.pdpipeline.org
The Parkinson Pipeline Project is a grassroots group of advocates whose goal is to provide the patient perspective in the treatment development process.
ParkinsonsHealth.com
www.parkinsonshealth.com
ParkinsonsHealth.com offers tips and tools for living with Parkinson’s disease, information on symptoms and treatments, and animated illustrations related to PD. The site also offers registration for Life in the Balance™, a free newsletter for people and families living with PD.”
Caregiver Information
National Family Caregivers Association
www.nfcacares.org
This is a grass roots organization created to educate and support the millions of Americans who care for chronically ill loved ones.
Family Caregiving Alliance
www.caregiver.org
A non-profit organization providing general information on caregiving and links to community services and support.
For The Children
PDKIDS
www.coles.org.uk/pdkids.htm
Site for kids living with parents who have Parkinson’s, established by the APDA Young Parkinson’s Information and Referral Center in partnership with the Adrienne Coles Memorial Trust.
Kids Health
www.kidshealth.org/kid/grownup/conditions/parkinson.html
Good site to explain Parkinson Disease to kids.
Find Out More About PD
Web MD
www.webmd.com
eMedicine from WebMD
www.emedicine.com/neuro/topic635.htm
Clinical reference guide.
The Movement Disorder Society
www.movementdisorders.org
International Professional Society of clinicians, scientists, and other healthcare professionals.
Medscape
www.medscape.com/px/urlinfo
Provides scientific abstracts and links for health-related questions.
Medline
www.nlm.nih.gov/medlineplus
A search service sponsored by the National Institutes of Health and the U.S. National Library of Medicine.
Online Medical Dictionary
www.cancerweb.ncl.ac.uk/omd
Useful for definitions of medical terminology.
Medical Matrix
www.medmatrix.org
Updated clinical medicine resources.
BMJ Publishing Group
www.bmj.com
Physician’s site. Great for doing article searches.
RightHealth
www.righthealth.com
Uniquely searchable medical information.
National Institute of Health
www.nih.gov
Health information, grants and funding opportunities, news, events, and scientific resources.
National Library of Medicine (Pubmed)
www.ncbi.nlm.nih.gov/pubmed/
Neurosciences on the Internet
www.neuroguide.com
Provides general information on brain related topics, including grants and funding opportunities, and links to other scientific resources.
National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov
Provides information on neurological disorders and research.
National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm
Searchable research information on Parkinson disease and stroke.
National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov/funding/research/parkinsonsweb/research_agenda.htm
This NIH disease specific web site was developed to facilitate research efforts on Parkinson’s Disease, track the progress of the PD Research agenda and Matrix activities, and provides both the research and lay community with information and resources.
Centers for Disease Control and Prevention
www.cdc.gov
Learn About Your Medications And Get Help To Pay For Them
RatioPharm
www.ratiopharm.ca/english
Written by Canadian pharmacists for consumers.
Pharmaceutical Research and Medications of America
www.phrma.org
Provides information on medicines, including a Directory of Prescription Drug Patient Assistance.
RxHope
www.rxhope.com
Supported by Pharmaceutical and Research Manufacturers of America. Provides more information on prescription drug assistance.
Deep Brain Stimulation
Medtronic, Inc
www.medtronic.com
Medtronic is the medical technology company that manufactures DBS implant. Provides information and research provided on how the device works and what it is useful for.
Other Places to Learn
American Association of Retired Persons (AARP)
www.aarp.org
Provides health information for senior citizens, and links to community resources and services.
Medicare Information
www.medicare.gov
Provides searchable information on the basics of the Medicare program and its coverage.
Roll Call
www.rollcall.com
Political updates. It’s the newspaper of Capitol Hill.
Benefits for People with Disabilities
www.ssa.gov/disability
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. This site provides information about the criteria necessary to qualify for assistance, application forms, and frequently asked questions.
GovBenefits.gov
www.govbenefits.gov
The official government benefits website, this free, easy to use and confidential site helps you find the government benefits you may be eligible to receive.
Congress.org
www.congress.org
Congress.org is a joint venture of two Washington, D.C. area firms with expertise in communicating with Congress.
The Dana Alliance / The Dana Foundation
www.dana.org/about
Living alone with Parkinson’s Disease
www.livingalonewithparkinsons.com
Anecdotal observations from a patient who has lived alone with PD for 20 years.
AMA Guidelines for Health Information on the Internet
www.ama-assn.org/ama/pub/category/1905.html
Health Finder
www.healthfinder.gov
Sponsored by the U.S. Dept. of Health and Human Services.
Sympatico/MSN
www.healthandfitness.sympatico.msn.ca/Home/Home
Health and Fitness Information with streaming video.
Healing Well
www.healingwell.com
Searchable information for patients and families.
Motivating Moves for People With Parkinson’s
www.motivatingmoves.com/janetmm.html
The importance of exercise for a person with Parkinson’s has long been recognized as essential to disease management and improved quality of life. Motivating Moves for People with Parkinson’s is an award-winning program of 24 seated exercises offered by the Parkinson’s Disease Foundation. The exercises are specifically designed to address typical Parkinson’s movement challenges such as stability, flexibility, posture, vocal range and facial expressivity.
Local Clinical Trial Postings
Clinicians at the Southeastern Center for Parkinson Disease are actively involved in the discovery of new and better avenues to improve patient wellness. Here are just a few of our most recent clinical trials:
– Interferon beta-1a vs. Interferon beta-1b: observation of efficacy, Berlex.
– Avonex Combination Trial. (ACT)/C-865, Biogen.
– Adagio Trial. (Rasagaline for Parkinson Disease),Teva.
– Ono Trial. (Acute Stroke treatment)
Clinical Trial Search Engines
Explore the links below for additional information on cutting edge research. Speak with your physician about trials that might be right for you.
Center Watch
www.centerwatch.com
Lists industry and government funded clinical trials across the US. Provides basic information on how clinical research is conducted.
Mayo Clinic
www.mayoclinic.com
Nationally recognized PD research group. Provides information on current research and clinical trials.
National Institutes of Health
www.ClinicalTrials.gov
Provides listing of Parkinson’s disease clinical research studies and contact information. This site also provides information on the clinical trial process.
PDtrials.org
www.PDTrials.org
Acts as a comprehensive resource for finding and understanding clinical trials in PD.
Pain, Hospice, Palliative Care
Beth Israel Medical Center Department of Pain Medicine and Palliative Care
www.stoppain.org
Provides educational materials, bibliographies, research tools, email discussion groups, courses, conferences, clinical trial information, and support groups.
The National Hospice and Palliative Care Association
www.nhpco.org/templates/1/homepage.cfm
The National Hospice and Palliative Care Organization is the oldest and largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
Tidewell Hospice and Palliative Care (Sarasota, Florida)
www.tidewell.org
Sarasota, Florida website.
National Respite Coalition
www.chtop.org/ARCH/ARCH-National-Respite-Coalition.html
The National Respite Coalition works to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.
National Respite Locator Service
www.chtop.org/ARCH/National-Respite-Locator.html
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state.
Early Onset Parkinson Disease
Young Onset Parkinson’s Association
www.yopa.org
YOPA is comprised of Young Onset Parkinson’s patients from around the country. The mission of YOPA is to raise public awareness and to offer support to those living with Young Onset Parkinson’s disease. In addition, YOPA will coordinate with local, regional and national Parkinson’s organizations in fundraising efforts for Parkinson’s research.
National Young Onset Center
www.youngparkinsons.com
Provides information for young-onset Parkinson patients.
“James”, a site about Parkinson’s disease
www.james.parkinsons.org.uk
Provides information on PD, links to other online resources, and a directory of PD e-mail mailing lists.
Young Parkinson’s
www.youngparkinsons.org
More information for patients with young onset Parkinson Disease.
World Parkinson Disease Association
www.wpda.org
Provides a weekly updated listing of worldwide PD research and news.
Parkinson Society Canada
www.parkinson.ca
Parkinson’s Australia, Inc.
www.parkinsons.org.au
The Parkinsons Association of Western Australia
http://www.parkinsonswa.org.au/
Parkinsons New South Wales Inc.
www.parkinsonsnsw.org.au
Parkinson’s Australia, Inc.
Contact: c/o Parkinson’s NSW, Inc.
Concord RG Hospital, Bldg. 64, Hospital Rd.
Concord
NSW 2139
Australia
Parkinson’s Victoria Inc.
www.parkinsons-vic.org.au
Europark – Asociacion Europea Pacientes
www.sarenet.es/parkinson/
Parkinson Selbsthilfeverein Oberosterreich
Contact: Reinhard Hinterleitner
Bindergraben 4
Katsdorf 4223
Austria
T:: 43 7235-82-84
Belgische Parkinson Vereniging
Contact: Monique de Plaen
J. Stobbaertslaan 43
Bruxelles 1030
Belgium
T: 32 2245-59-45
Associaçäo Brasil Parkinson
www.parkinson.org.br
Parkinson’s Disease Society
Ruska 69
Prague 10
10000
Czech Republic
T: 42 274-42-38
Dansk Parkinsonforening
www.parkinson.dk
Contact: Joyce Schmidt
Bomlaerkevej 12
Horsholm 2970
Denmark
T: 45 4286-72-09
F: 45 4286-91-09
Danish Motion Disorder Society
www.danmodis.dk
www.danmodis.dk/parkinso.htm
Faroe Islands
Foroya Parkinsonfelagid
Contact: Tordur Mikkelsen
Varagota 9
Faeroer
Faeroes
Finlands Parkinsonforbund
www.parkinson.fi
Contact: Brita Nyborn
Suomen Parkinson-litto, PB 905
Turku 20101
Finland
T: (358) 2-2740-400
F: (358) 2-2740-444
Email: Brita.Nyborn@parkinson.fi
Fédération Française des Groupements de Parkinsoniens
T Président : 01 47 49 37 42
T Siège : 01 30 53 20 29
Contact: Marcel Besnard
3 Chemin du Grand Fosse
St. Nazaire 44600
T: 33 4022-00-84
Association France Parkinson
T : 01 45 20 22 20
Contact: Alain Honorat
37 bis rue la Fontaine
Paris 75016
T: 33 145-202-220
F: 33 140-501-644
Deutsche Parkinson Vereinigung Bundesverband e.V.
Contact: Friedrich Mehrhoff
Moselstrasse 31
Neuss 41464
T: 49 213-141-016/7
F: 49 213-145-445
Parkinsonsamtokin a Islandi
Contact: Aslaug Sigurbjornsdottir
Grandavegi 47
Reykjavik 107
T: 354 127-417
Parkinson Disease Foundation of India
www.parkinsonsdiseaseindia.com/index1.htm
Parkinson’s Disease Surgery
www.parkinsonindia.org
Associazioni Italiana Parkinsoniani
www.parkinson.it/aip
Contact: Marzio Piccinini
Via Zuretti 35
Milano 20125
T: 39 266 671 31111
F: 39 267 05283
Email: aip@parkinson.it
Azione Parkinson
Contact: Antonella Morini
Via Quintino Majorana, 149
Roma I-00152
T: 39 65-599-200
F: 39 65-599-200
Association Luxembourgeoise de la Maladie de Parkinson
Contact: Junker Jean
169 Avenue de la Liberation
Schifflange 3850
T: 352 546-221
BP 1348
L-1013
T: 352 54 62 21
Parkinson Patienten Vereniging
www.parkinson-vereniging.nl
Postbus 46
3980 CA Bunnik
T: 030-6 56 13 69
E-Mail: info@parkinson-vereniging.nl
Netherlands
www.timpani.nl
Norges Parkinsonforbund
www.parkinson.no
Contact: Frank Marring
Schweigaardsgt. 34, bygg F, oppg. 2
Oslo 0191
T: 47 22-175-861
F: 47 22-175-862
Regional Parkinson’s Disease Patients Association in Warsaw
Jodkowa 22/102-907
T: 48 22 22 42 1331
Cracow Parkinson’s Disease Association
Dr Anna Krygowska-Wajs
Klinika Neurologiiul
Botaniczna 331-503
T: 48 12 61 88687
F: 48 12 42 14069
Parkinson’s Disease Scottish Resource
10 Claremount Terrace, Glasgow G3 7XR
T: 0141 332 3343
Parkinson’s Disease Association of Slovenia
Contact: c/o Dr. Zvezdan Pirtosek
Institute of Clinical Neurophysiology,
University Medical Centre
Ljubljana 1525
T: 38 661-316-152
F: 38 661-302-771
Parkinson Association South Africa
www.parkinsons.co.za
Parkinson Espana
Contact: Maria Jose Ruiz
C/ de la Torre, 14 bajos
Barcelona 08006
T: 34 34-160-320
F: 34 34-161-060
Parkinson’s en Espanol
www.sarenet.es/parkinson
Svenska Parkinsonförbundet
www.parkinsonforbundet.se
Nybrokajen 7, 111 48
Stockholm
T: 08-611 93 31
e-mail: ordf.sto@swipnet.se
Svenska Parkinsonstiftelsen
Contact: Filip Garstam
Karlagatan 23
Goteborg 41661
T: 46 31-193-020
F: 46 31-190-245
Svenska Parkinsonstiftelsen
www.communique.se/parkins
Schweizerische Parkinsonvereinigung
www.parkinson.ch
gewerbestrasse 12a
postfach 123
8132 egg
T: 01 984 01 69
F: 01 984 03 93
e-mail: info@parkinson.ch
Parkinsons Disease Society of the United Kingdom
www.parkinsons.org.uk
