National Organizations

 

 

AARP – Caregiving Resource Center

888-687-2277

https://www.aarp.org/home-family/caregiving/

601 E Street, NW

Washington, DC 20049

Helpful articles and resources for Caregivers.

 

Aging Life Care-Southeast Chapter

520-881-8008

https://www.sealca.org/

3275 W. Ina Road, Suite 130

Tucson, AZ 8574

Experts in aging well. Serving AL, GA, MS, NC, SC and TN. An Aging Life Care Manager® specializes in assisting older people and their families with long-term care arrangements. They help with the challenges of long-distance caregiving, put together a comprehensive plan for present or future needs, provide extra assistance for relocation, or monitor your relative during your vacation. There is a fee for this service.

 

Alabama Physical Therapy Association

251-216-3660

info@ptalabama.org

https://www.ptalabama.org/

List of Accredited PT and PTA programs in AL. Evidence-based practice resources. Evidence, Education and information resources.

 

American Parkinson Disease Association (APDA)

800-223-2732

apda@apdaparkinson.org

http://www.apdaparkinson.org

135 Parkinson Ave.

Staten Island, NY 10305-1425

Literature, Education, Support, Research, Events, Access to Local Resources, Veterans, Blog

 

Bachmann-Strauss Dystonia & Parkinson Foundation

212-509-0995

info@bsdpf.org

http://www.dystonia-parkinson.org

PO Box 38016

Albany, NY 12203

The Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF) is a voluntary, non-profit organization that was established in 1995 to find better treatments and cures for the movement disorders dystonia and Parkinson's disease and to provide medical and patient information.

 

Brain & Life (Parkinson Disease)

612-928-6134

aweiss@aan.com

http://www.brainandlife.org

201 Chicago Avenue

Minneapolis, MN 55415

Information published by the American Academy of Neurology. Information for neurology news, resources, and information on brain health for PD and other neurologic conditions.  Brain & Life® is published 6 times per year and mailed free to interested individuals who complete the online form.

 

Brain Support Network

650-814-0848

https://www.brainsupportnetwork.org/

PO Box 7264

Menlo Park, CA 94026

Brain Support Network (BSN) is a non-profit organization dedicated to the well-being of those challenged by neurodegenerative disorders.  Focused on brain donations, education and support.

 

Caregiver Action Network

202-454-3970

info@caregiveraction.org

https://www.caregiveraction.org/

1150 Connecticut Ave, NW, Suite 501

Washington, DC 20036

Speak with caregivers. Tips, Caregiver toolbox, videos, stories, agencies and organizations (like assistance with Rx_) respite resources. Training for caregiver, disease-specific, health related agencies and websites.

 

Caregiver Stress

888-575-0946

https://www.caregiverstress.com/

Caregiver resources, expert blogs, aging issues, safe driving planner, end of life planning and more.

 

CareLinx

800-494-3106

info@carelinx.com

https://www.carelinx.com/

Has a portal to find an in-home Caregiver close by. Features a Care Academy of videos and articles per health issue. The CareLinx Blog is a rich resource for everyone from caregivers and families, to hospitals and health plans. Stay informed about the latest industry trends.

 

Choose a Physical Therapist

https://www.choosept.com/

Link to find a licensed physical therapist in your area. Has information on symptoms and conditions.

 

Cure Now: PD

860-918-9594

inquire@curenowpd.org

https://curenowpd.org/

102 Pitkin Street

East Hartford, CT 06108

CureNow:PD exists to be positive agents of change in PD research.  The focus is on bringing full enrollment and participation to studies and clinical trials using a local network of Parkinson’s ambassadors to make that happen.

 

CurePSP

800-457-4777

info@curepsp.org

https://www.psp.org/

1216 Broadway, 2nd Floor

New York, NY 10001

CurePSP is the leading nonprofit organization working to improve awareness, education, care and cure for devastating prime of life neurodegenerative diseases. These include progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA), and others.

 

Daily Caring

hello@dailycaring.com

https://dailycaring.com/

A Caregiver's beginner's guide, managing family dynamics, caregiver wellness, etc. Daily Caring search everywhere to find the most practical and useful tips, advice, personal stories, and resources related to caregiving and aging. Then, they boil it down to the most important points you’ll want to know.

 

Dance for PD

800-957-1046

support@danceforpd.org

https://danceforparkinsons.org/ 

Lists Dance Classes in Alabama

 

Davis Phinney Foundation (DPF)

866-358-0285

contact@dpf.org

http://www.davisphinneyfoundation.org

357 S McCaslin Blvd, Suite 105

Louisville, CO 80027

Literature, Ambassadors, Webinars, Blog, Every Victory Counts Manuel, The Parkinson's Podcast, Research, Events

 

Diann Shaddox Foundation for Essential Tremor

https://www.diannshaddoxfoundation.org/

241 Boxelder Drive

Aiken, SC 29803

Diann Shaddox Foundation for Essential Tremor is a Non-Profit public organization with the mission to educate, increase awareness about people afflicted with Essential Tremor and to find a cause and cure.

 

Drugs.com (PD)

List of 54 Parkinson's Disease Medications Compared - Drugs.com

Searchable database to find up-to-date drugs and conditions. Has pictures to identify pills and an Interaction checker. As well as other kinds of Parkinson's Disease (PD).

 

Emory Healthcare (Neurology) Parkinson’s Disease Comprehensive Care Clinic

404-727-6123

https://emoryhealthcare.org/ 

201 Dowman Drive

Atlanta, Georgia 30322 

Emory is a Center of Excellence in Parkinson’s Disease and offers a variety of unique services to its patients, including a Comprehensive Care Clinic for PD patients, large deep brain stimulation (DBS) team, and a number of research opportunities.

 

Family Caregiver Alliance (FCA)

800-445-8106

info@caregiver.org

https://caregiver.org/

101 Montgomery Street, Suite 2150

San Francisco, CA 94104

FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

 

FamilyDoctor.org

800-274-2237

913-906-6000

aafp@aafp.org

https://familydoctor.org/

11400 Tomahawk Creek Parkway

Leasood, KS 66211-2680

Trusted medical advice from the American Academy of Family Physicians. Interactive symptom checker, health-related news and articles

 

Find a Cure Panel & Magazine

323-717-8117

dlowell@sampleczar.com

info@FindACurePanel.com

http://findacurepanel.com/index.html

PO Box 36156

Los Angeles, CA 90036

Find A Cure Panel (FACP) specializes in patient and caregiver research for general ailments, serious and rare diseases, injuries, disorders and conditions. Includes Parkinson's.

 

Get Palliative Care

https://getpalliativecare.org/

Getpalliativecare.org is a website providing clear, comprehensive palliative care information for people living with a serious illness. Key features of the site include a Palliative Care Provider Directory, a definition of palliative care, and detailed descriptions of what palliative care does and how to get it. It also provides an interactive quiz to assist you in deciding whether palliative care might be right for you or a loved one. The site is provided by the Center to Advance Palliative Care (CAPC).

 

Harvard Health Publishing

https://www.health.harvard.edu/a_to_z/parkinsons-disease-a-to-z

To read articles, you must Login.  Harvard Health Publishing (HHP) is the consumer health education division of Harvard Medical School (HMS), under the direction of Dr. David H. Roberts, Dean for External Education. Our publications draw on the expertise of the 11,000+ faculty physicians at HMS, as well as our world-famous affiliated hospitals, to provide authoritative, trustworthy, and actionable health information to our global audience. Our content is delivered in easy-to-understand language that supports patient education and consumer engagement.

 

Huntington’s Disease Society of America

800-345-4372

212-242-1968

HDSAinfo@HDSA.org

https://hdsa.org/

505 Eighth Avenue, Suite 902

New York, NY 10018

HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

 

International Congress of Parkinson’s Disease and Movement Disorders

414-276-2145

info@movementdisorders.org

https://www.mdscongress.org/

555 East Wells Street, Suite 1100

Milwaukee, WI 53202

The International Parkinson and Movement Disorder Society (MDS) is a professional society of clinicians, scientists, and other healthcare professionals who are interested in Parkinson's disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic movement disorders, and abnormalities in muscle tone and motor control. Learn latest news, research, and advances in movement disorders.

 

Lewy Body Dementia Association, Inc.

800-539-9767

404-991-7897

https://www.lbda.org/

912 Killian Hill Road SW

Lilburn, GA 30047

Patient and Caregiver services. Free publications. Local LBD Support Groups, virtual groups.

 

LSVT Global

https://www.lsvtglobal.com/

Link to find a LSVT BIG or LSVT LOUD clinicians in your area. Explains what LSVT is.

 

Mayo Clinic (PD)

904-953-0853

https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

Focus on PD and various health information, tests and procedures, drugs and supplements, symptoms, etc. Mayo Clinic Health Letter (Digital) is $9.99/yr.  You can request an appointment online.

 

Medicare Rights Center

800-333-4114

https://www.medicarerights.org/

Counseling, Advocacy, Financial, Education, Policy work, News, Media Center

 

Medline Plus (NIH Affiliate)

301-496-4000

https://medlineplus.gov/parkinsonsdisease.html

8600 Rockville Pike

Bethesda, MD 20894

Excellent source of clinical information on PD, including resources, videos, journal articles, etc.

 

Michael J. Fox Foundation (MJFF)

800-708-7644

212-509-0995

https://www.michaeljfox.org

Grand Central Station

PO Box 4777

New York, NY 10163-4777

Literature, Webinars, Books, Podcasts, Events, Ask the MD, Research, Young Onset PD

 

Middle Alabama Area Agency on Aging (M4A)

205-670-5770

866-570-2998

cfortner@m4a.org

http://www.m4a.org

209 Cloverdale Circle

Alabaster, AL 35007

M4A has many programs to assist older Americans, people with a disability, and caregivers.  Home delivered meals, caregiver support, senior employment program, evidenced based programs, diabetes self-management, walk with ease, and others.

 

MSA Coalition

866-737-5999

info@multiplesystematrophy.org

https://www.multiplesystematrophy.org/

9935- D Rea Rd #212

Charlotte, NC 28277

To distinguish MSA from PD, MSA Coalition is expanding educational initiatives to help physicians make an earlier diagnosis, participating in advocacy events to raise awareness for MSA and Rare Disease issues, leading and participating in MSA Awareness Month activities, while actively funding well-vetted MSA research grants with the goal of eventually finding a cause and a cure for Multiple System Atrophy.

 

National Association of Area Agencies on Aging

https://www.n4a.org/

The National Association of Area Agencies on Aging (n4a) is a 501(c)(3) membership association representing America’s national network of 622 Area Agencies on Aging (AAAs) and providing a voice in the nation’s capital for the 256 Title VI Native American aging programs. Offers health insurance assistance, brochures, publications, resources and initiatives.

 

National Ataxia Foundation

763-553-0020

naf@ataxia.org

https://www.ataxia.org/

600 Highway 169 S, Suite 1725

Minneapolis, MN 55426

NAF offers many educational resources for Ataxia, including a comprehensive library of brochures, fact sheets, and books. NAF also publishes Generations, a quarterly magazine centered around Ataxia and families affected. We provide a number of ways for the Ataxia community to connect, such as: NAF Support Groups, a Facebook Ataxia Support Group, various Ataxia events, medical expos, and most importantly, the Annual Ataxia Conference – a two-day conference designed for Ataxia experts and Ataxia families to come together.

 

National Institute of Health (NIH)-Clinical Trials

http://clinicaltrials.gov

8600 Rockville Pike

Bethesda, MD 20894

Search for clinical trials related to PD and whether they are recruiting participants.

 

National Institute of Neurological Disorders and Stroke

https://www.ninds.nih.gov/Disorders/All-Disorders/Parkinsons-Disease-Information-Page

General information about PD, including treatment, prognosis, organizations, publications, etc.

 

Next Step in Care

nextstepincare@uhfnyc.org

https://www.nextstepincare.org/

Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. Has helpful Guides and Checklists.

 

Northwest Alabama Council of Local Governments Department of Aging Services

256-389-0500

kjones@nacolg.org

http://www.nacolg.org

103 Student Drive

Muscle Shoals, AL 35661

Senior centers, Alzheimer's respite, Medicaid waiver, Ombudsman program and chronic disease self management program.

Parkinson Alliance

800-579-8440

609-688-0870

contact@parkinsonalliance.org 

https://www.parkinsonalliance.org/

PO Box 308

Kingston, NJ 08528-0308

Assist with patient-centered research and resources. 

Parkinson Association of Alabama, Inc.

833-473-5465

executive.director@parkinsonalabama.org

https://www.parkinsonalabama.com/

PO Box 590146

Birmingham, AL 35259

A nonprofit organization serving the needs and concerns of patients with Parkinson's Disease and their families/friends throughout AL.  Staff engage in social and professional networking, fundraising, research support, developing and coordinating PD Support Groups, Outreach services, PD webinars, newsletters and a resource center to interact with the PD community. 

 

Parkinson Canada

https://www.parkinson.ca/resources/educational-publications/

Fact Sheets and Publications related to Parkinson's

 

Parkinson Foundation’s – CareMAP

800-473-4636

contact@parkinson.org

https://www.parkinson.org/pd-library/careMAP-website

1359 Broadway, Suite 1509

New York, NY 10018

Managing advanced PD website. Guide to coping with complex problems that arise as a result of advanced PD. How-to videos, caregiver stories provide practical and personal tips (changes around the house, planning and scheduling, dressing, medications and swallowing, travel and transportation, care for yourself, etc.

 

Parkinson Wellness Fund

757-313-9729

mwpfassistance@verizon.net

https://www.parkinsonwellnessfund.org/

2224 VA Beach Blvd., Suite 205

Virginia Beach, VA 23454

Providing access to financial services and support needed to live an improved quality of life-today.

 

Parkinson Wellness Recovery PWR!

520-591-5346

https://www.pwr4life.org/

PWR!4Life is a comprehensive neuroplasticity-principled program that integrates the latest research on Parkinson disease and Rehabilitation, Exercise, and Wellness.  Education, empowerment, find a Coach, Motor and Non-Motor assistance, etc. Virtual Exercise. Retreats. Join their monthly newsletter.

 

Parkinson’s Foundation (PF)

800-473-4636

contact@parkinson.org

https://www.parkinson.org/

1359 Broadway, Suite 1509

New York, NY 10018

Helpdesk, PD Library-Literature, Professional Education, Events, Research

 

Parkinson’s Life

https://parkinsonslife.eu/

1 Cobden Road

Sevenoaks, Kent, TN

13 3UB United Kingdom

Launched in mid-2015, PL has been dedicated to publishing high-quality content for the international Parkinson’s community. Voices, Well-Being, Research, Podcasts, etc.

 

Parkinson’s News Today

800-936-1363

info@bionews.com

https://parkinsonsnewstoday.com/

1601 Market Street, Suite 20A105

Philadelphia, PA 19103

News and information to stay up to date on all the latest on Parkinson’s disease. Newsletter subscriptions available. There is also a​ ​Forum​ ​for​ ​Parkinson’s Disease ​Caregivers​.

 

Parkinson’s Resource Organization

760-773-5628

877-775-4111

info@parkinsonsresource.org

https://www.parkinsonsresource.org/

74785 CA-111

Indian Wells, CA 92210

A social service organization in Palm Desert CA to insure no one with PD is isolated.  Articles, online groups and events. Also has a monthly newsletter. 

 

Rock Steady Boxing

317-205-9198

info@rocksteadyboxing.org

https://rocksteadyboxing.org/

7440 N. Shadeland Avenue, Suite 202

Indianapolis, IN 46250

Resource for local Rock Steady Boxing classes and affiliate programs throughout AL. Blog and News.

 

The Association for Frontotemporal Degeneration

866-507-7222

info@theaftd.org

https://www.theaftd.org

290 King of Prussia Rd, Radnor Station Bldg 2, Suite 320

Radnor, PA 19087

Site has reliable information, valuable resources and support from others who understand FTD.

 

The Conversation Project (Institution for Healthcare Improvement)

617-391-9913

conversationproject@IHI.org

https://theconversationproject.org/

53 State St, 19th Floor

Boston, MA 02109

The Conversation Project® is a public engagement initiative with a goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.

 

Tremor Action Network

510-681-6565

888-387-3667

913-341-3880

https://essentialtremor.org/

PO Box 5013

Pleasanton, CA 94566

PO Box 14005

Lenexa, Kansas 66285-4005

Service of the International Essential Tremor Foundation to provide hope to the essential tremor (ET) community worldwide through awareness, education, support and research.

 

UAB Medicine (Neurology—Movement Disorders Clinic)

205-801-8986

llieb@uabmc.edu

https://www.uabmedicine.org/patient-care/conditions/parkinsons-disease

2000 6th Ave. S, 2nd Floor

Birmingham, AL 35233

UAB’s commitment to pioneering research keeps us on the forefront of medical discoveries, which could lead to opportunities for you to participate in clinical studies and receive medications and treatments not available at other medical centers.

 

Veteran’s Administration-Parkinson’s Disease & Geriatric and Extended Care

205-933-8101

debra.dellinger@va.gov

annie.liwong@va.gov

https://www.parkinsons.va.gov/

2415 7th Avenue S

Birmingham, AL 35233-3317

Has links to national PD organizations, PADRECCs, Consortium Centers, VA PD Newsletter, a tab for Palliative Care video and or Caregiving, Community Living Centers, etc. State and Local Resources as well.

 

WebMD

https://www.webmd.com/drugs/2/index

 

Well Spouse Association

732-577-8899

info@wellspouse.org

https://wellspouse.org/

63 West Main St., Suite H

Freehold, NJ 07728

Addresses needs and resources for caregivers. Has Support Groups, Newsletters, Events, Webinars, etc.

 

What Matters Now

877-365-5533

info@whatmattersnow.org

http://www.whatmattersnow.org/

20660 Stevens Creek Blvd #320
Cupertino, CA 95014

A website for Patient Support; allows patients to create their own free, private What Matters Now site to: Easily keep family and friends up to date, Share what's really happening, Reflect deeply, and Celebrate life.

 

World Parkinson Coalition, Inc.

646-388-7688

info@worldpdcoalition.org

https://www.worldpdcoalition.org/

1359 Broadway, Suite 1509

New York, NY 10018

The World Parkinson Coalition® provides the only international forum on Parkinson's disease that invites all stakeholders to learn about the latest scientific discoveries, medical practices, and care initiatives that improve the lives of people living with Parkinson's disease.  It is also the host of World Parkinson Congresses (conferences).