National & Regional Resources

American Parkinson’s Disease Association

Website: apdaparkinson.org

The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease.

APDA Centers for Advanced Research in Florida

Mayo Clinic, Jacksonville

APDA funding supports:

  • Studies to identify novel gene mutations that contribute to Parkinsonism
  • A range of clinical trials from gait in advanced PD to Lewy bodies of the gut
  • A highly active DBS program with 75-100 procedures performed per year
  • Approximately 1,500 patients seen each year

APDA For Care Partners

Web:  https://www.apdaparkinson.org/resources-support/for-caregivers/

When one person in a couple or family is affected by Parkinson’s disease, the other family members live with it as well. To keep your care partnering relationship healthy and balanced, it’s important that the care partner finds time to take a break from caregiver duties, has some outside interests, and has others they can turn to for support and resource information.

Go to Care Partner Resources

APDA’s First Responder Parkinson Awareness Training

Web:  https://www.apdaparkinson.org/resources-support/first-responder-training/

This 1-2 hour web-based course with instructional videos intended to provide overall education about Parkinson’s disease and information on protocols for the first responder when interacting with a person who shows the signs of Parkinson’s.  The first responders training program has been posted on state training websites in New Jersey, Pennsylvania, New Hampshire, and South Carolina. Other states will be adding the program in the coming year; CEUs may be available through these states’ websites. A non-CEU version of the program is available on the APDA website via the link below.

Take the Online Course

ADPA National Young Onset Center

Web: https://www.apdaparkinson.org/what-is-parkinsons/early-onset-parkinsons-disease/

For those who have been diagnosed under the age of 50, APDA provides resources and information to help younger people with Parkinson’s Disease live active and productive lives. Our Early/Young Onset section offers a wide range of resource links and discusses issues that are particularly relevant to people with young onset Parkinson’s disease, such as ongoing employment, parenting, and planning for the near and distant future.

Learn About Early Onset Parkinson’s

APDA Parkinson’s Disease Training Program for Fitness Professionals

Web: https://www.apdaparkinson.org/pd-fitness-training/

This 1–2-hour online training program has been developed to assist fitness, health and wellness professionals so they may safely and effectively work with people with PD to develop exercise regimens that will support treatment of their symptoms and substantially improve their quality of life. It will also teach professionals about the signs and symptoms of PD and the important ways in which exercise can improve those symptoms, as well as how to describe common PD symptoms and clearly explain the benefits of exercise to those with PD.

Those who complete the training course receive a certificate of completion.

Take the Training Program

APDA Veterans with PD

Web: https://www.apdaparkinson.org/resources-support/national-veteran-resources/

In 2017, APDA published Helping Those Who Serve: Parkinson’s Disease Information for Veterans Community. This manual offers general information about Parkinson’s diagnosis, symptoms and treatment, tips for coping with disease progression and support for care partners. It also provides step by step directions on how to access the Veterans’ Affairs (VA) system and receive care from the VA PADRECC (Parkinson’s Disease Research, Education, and Clinical Centers) and consortium centers across the country. The manual is accessible on the page linked below, and in print.

See Our Resources for Veterans

APDA Recursos En Español for Spanish Speakers

Web: https://www.apdaparkinson.org/resources-support/en-espanol/

Understanding the critical need to provide support to diverse Parkinson’s populations, APDA increased efforts to provide Spanish educational materials. To date,  APDA brochures and supplements have been written in Spanish and more continue to be developed. Additionally, APDA offers access to live phone support in Spanish through the 800-223-2732 toll free help line. Finally, an “En Español” section has been added to the APDA website to ensure that the Spanish-speaking community can get the important care and support they need.

Recursos en Español

Dance for PD

Website: danceforparkinsons.org/ 

Dance for PD® offers internationally-acclaimed dance classes for people with Parkinsons disease in Brooklyn, New York and, through their network of partners and associates, in more than 120 other communities in 16 countries. DVDs are also available for purchase.

Davis Phinney Foundation for Parkinson’s

Website: davisphinneyfoundation.org

The Davis Phinney Foundation for Parkinsons is an organization dedicated to helping people with Parkinsons to live well. Their website is an excellent resource for information on a wide range of topics pertinent to people with Parkinsons and their care partners. They offer many very helpful worksheets as well as essential exercise videos. 

First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. In subsequent editions, it has gained international recognition as a superb and comprehensive resource for changing the way people live with Parkinson’s. Now in its sixth edition, the manual is the cornerstone of our new Every Victory Counts suite of resources, a robust collection of printed and digital manuals (including a new Every Victory Counts Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy of taking action to improve your quality of life with Parkinson’s.

Click Here to Download or Order your Free Copy

LSVT Global

Website: https://www.lsvtglobal.com/ 

LSVT Global grew out of a clinical need to help people with Parkinson’s regain their lost vocal abilities. The scope of this work was eventually expanded to help people with PD improve their movements. Years of research and development led to effective treatments and a vibrant company whose core goal is to improve the lives of adults and children afflicted with neurological conditions.

In business since 2003, we are increasing the reach of our cutting-edge treatment approaches by offering expanded clinical training programs, greater online access to existing training, and exciting new applications to pediatrics.

Their mission – to develop innovative treatments that improve the speech and movement of people with Parkinson’s disease (PD) and other neurological conditions. We train speech, physical and occupational therapists around the world in these treatments so that they can positively impact the lives of their patients.

Michael J. Fox Foundation

Website: michaeljfox.org

The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. 

The Michael J. Fox Foundation (MJFF) exists for one reason: to accelerate the next generation of Parkinson’s disease (PD) treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD.

In principle, it means leveraging core values of optimism, urgency, resourcefulness, collaboration, accountability and persistence in problem-solving to work on behalf of the 6 million people worldwide living with Parkinson’s.

National Institute of Neurological Disorders and Stroke

Website: https://www.ninds.nih.gov/

NINDS is part of the National Institute of Health. The mission of NINDS is to reduce the burden of neurological disease. They conduct research, provide grants to public and private institutions and individuals in fields related to its areas of interest, operate a program of contracts for the funding of research and research support efforts in selected areas of institute need, provide individual and institutional fellowships to increase scientific expertise in neurological fields, and collect and disseminate research information related to neurological disorders.

Parkinson’s Disease Foundation

Website: parkinson.org

Phone: (212) 923-4700

The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of the global Parkinson’s community.

Our Promise

The challenges of living with Parkinson’s disease, improving care and finding a cure can seem overwhelming. No individual or group can do it alone.

We are the Parkinson’s Foundation. A community. An alliance. A movement. Where people living with Parkinson’s, families, caregivers, scientists, advocates, donors and volunteers join forces to improve lives and advance toward a cure.

For over half a century, we’ve made tangible progress on all fronts, from the largest clinical study of Parkinson’s, which has significantly improved care, to breakthrough treatments. Today, we continue to:

  • Provide life-changing support to people living with Parkinson’s and their caregivers
  • Fund game-changing research on treatment and care
  • Convene the best minds from every corner of the global Parkinson’s community to find new approaches that enhance care and move us closer to a cure.

Everything we do is based on experience and informed by facts. The people we serve deserve nothing less than the highest level of support based on validated research and deep encouragement grounded in reality. Our donors and volunteers need to know that we are 100% accountable. This is why we focus on verifiable outcomes, not vague promises.

In partnership with the entire Parkinson’s community, we are making a real difference in people’s lives. And we have the research, the data — and the stories — to prove it. This is what happens when we all pull together as one global, determined and inspired movement. Better Lives. Together.

The Aware in Care Kit

(Click for More Information)

The Aware in Care kit includes tools and information that will help people with Parkinsons and their families plan for the next hospital stay. The kit includes:

    • Aware in Care Bag — This black bag is large enough to store all the materials from the Aware in Care kit as well as extra bottles of your Parkinsons medications.
  • Hospital Action Plan — This 24-page booklet outlines 10 steps to take to get the best care possible during a hospital stay, and provides additional guidance for people with special needs.
  • Parkinson’s Disease ID Bracelet — This stainless steel, hypo-allergenic bracelet is designed for 24/7 wear. The bracelet indicates the wearer has Parkinson’s disease, refers to the wallet card for more information, and provides the Parkinson’s Foundation Helpline number for additional assistance.
  • Medical Alert Card — a card providing additional guidance about treating a person with PD. It is designed to be folded up and placed in a person’s wallet or pocketbook.
  • Medication Form — Each kit includes a pad of Medication Forms. The forms may be completed prior to a hospital visit and used to provide a complete list of the medications when requested at the hospital.
  • Parkinson’s Disease Fact Sheet — This fact sheet provides an overview of Parkinson’s and may be shared with hospital staff.
  • I Have Parkinson’s Reminder Slips — Each kit includes a pad of these reminder slips. Each slip has vital information about Parkinson’s disease that may be shared with every member of the care team in the hospital.
  • Magnet — The magnet, which says, “I have Parkinson’s and I need my medications on time, every time,” is a visual reminder of the importance of medication timing for people with Parkinson’s.
  • One kit per person please.  Please call 1-800-4PD-INFO (473-4636) for more info.

Parkinson’s and Movement Disorder Outreach (AdventHealth Neuroscience Institute)

Website: Parkinson’s Outreach Center

The Parkinson’s & Movement Disorder Outreach Program ( PMDOP) was founded in 2004. Since that time, the program has been offering support, education, and wellness programs to the Central Florida community free of charge. Staffed by social workers, the PMDOP is devoted to helping people live an empowered life with Parkinson’s and movement disorders. Programs & Services Offered: 

  • Free support groups for patients & caregivers
  • Long term care planning
  • Wellness and exercise programs
  • Education programs
  • Caregiver support and education
  • Information and referrals
  • Care Consultation (support through major diagnoses or life changes)
  • Weekly newsletters
  • Community events
  • Collaborate care our movement disorder physicians (must be a patient)

Parkinson’s Voice Project

Website: https://www.parkinsonvoiceproject.org/ 

To preserve the speech and communication of individuals with Parkinson’s and related neurological disorders through continuous speech therapy, follow-up support, research, education, and community awareness.

Partners in Parkinson’s

Website: partnersinparkinsons.org

Partners in Parkinsons is a collaboration between the Michael J Fox Foundation and AbbVie Pharmaceuticals with the aim of Connecting you with resources at every stage of the disease”. The site provides information on living with Parkinsons and putting together a care team. It offers useful tools and education resources. Webinars and other events are also sponsored.

PWR! Parkinson’s Wellness Recovery

Website: https://www.pwr4life.org/moves/ 

PWR! Is a 501(c)(3) non-profit organization based in Tucson, Arizona, providing cutting-edge therapy and wellness programming (i.e. exercise, education & enrichment) for people with Parkinson disease and their partners. Click here to find a PWR! Moves Certified Therapist.

The University of Florida Center for Movement Disorders and Neurorestoration

https://movementdisorders.ufhealth.org/for-patients/clinics/parkinsons-disease-center-of-excellence/

The University of Florida Center for Movement Disorders and Neurorestoration is a National Parkinsons Foundation Center of Excellence. It is located in Gainesville, Florida and is affiliated with Shands Hospital. The center offers a world-class patient centric interdisciplinary experience. Below are just a few of the offerings available there:

  • The potential to get your care from over 10 interdisciplinary specialists in a single day on a single floor of a single building
  • The world-renowned fast-track interdisciplinary work-up and care for deep brain stimulation surgery (DBS) for Parkinsons disease and other movement disorders
  • On site MRI, speech & swallowing treatment, and rehabilitation options
  • Expert Deep Brain Stimulation (DBS) Troubleshooting clinic where people travel from all over the world for diagnosis and management of DBS related problems or issues.