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.
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.
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 responder’s 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.
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.
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.
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.
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.
Website: danceforparkinsons.org/
Dance for PD® offers internationally-acclaimed dance classes for people with Parkinson’s 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.
Website: davisphinneyfoundation.org
The Davis Phinney Foundation for Parkinson’s is an organization dedicated to helping people with Parkinson’s to live well. Their website is an excellent resource for information on a wide range of topics pertinent to people with Parkinson’s 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.
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.
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.
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.
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:
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.
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:
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.
Website: partnersinparkinsons.org
Partners in Parkinson’s 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 Parkinson’s and putting together a care team. It offers useful tools and education resources. Webinars and other events are also sponsored.
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.
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 Parkinson’s 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:
Phone: (321)-345-1031
Email: [email protected]
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Brevard Parkinson’s Alliance is a 501(c)(3) organization. All donations fund group-sponsored initiatives throughout Brevard County, are 100% tax deductible, and greatly appreciated.