Top Parkinson's Foundations That Merit Your Support

Parkinson's disease (PD) is a complex brain disease that not only causes a decreased ability to move but is also linked to a number of other non-motor symptoms like sleep problems, depression, constipation, and loss of smell. Adding to its complexity is the fact that many of the current therapies for PD have side effects which limit their use.

Even though scientists have come a long way in terms of understanding the biology of PD and are developing novel therapies to better manage symptoms, there are still many challenges surrounding this somewhat elusive and debilitating neurodegenerative ("dying of brain cells") disease.

Ultimately, we want a cure for Parkinson's, and the only way to find a cure is through more research and awareness. While there are a number of foundations that strongly advocate for Parkinson's disease, it's normal to question which one you should focus on. That said, here is a list of Parkinson's foundations that seem worthy of your support.

The Michael J. Fox Foundation

Parkinson Foundations Support Research and Provide Education
Jamie McCarthy/Getty Images

The inspiring actor and advocate Michael J. Fox shares his story of living with Parkinson's on the foundation's website. He also enthusiastically promotes his (and the foundation's) main goal of finding a cure for PD.

Research

This private foundation is transparent about its research mission and precisely how it's funded—over $700 million has been dedicated towards PD research to date, making this foundation the world's biggest non-profit financier of PD research.

Get Involved

One way that you can get more involved with the Michael J. Fox Foundation is by becoming a Team Fox member. Team Fox is a grassroots community fundraising program in which people organize various fundraising events, like bike races and concerts, to raise money for PD research.

There is even a Team Fox Young Professional (YP) group located in six cities in the United States, as well as in Toronto, Canada. This group is comprised of 20 to 30-year-olds with different work backgrounds, most of whom have a loved one with Parkinson's. These professionals take on a unique leadership role and remain committed to raising money for research.

Resources

The Michael J. Fox Foundation offers a wealth of knowledge on PD. One innovative educational tool they use is the video "Foxfeed Blog" which features a neurologist and movement disorder specialist who weighs in on pertinent topics related to PD.

National Parkinson Foundation

Founded in the 1950s, the National Parkinson Foundation, or NPF, aims to improve the lives of those living with Parkinson's disease.

Research

One huge research study underway is NPF's Parkinson's Outcomes Project which has nearly 10,000 participants. The purpose of this study is to examine several factors that impact how well a person lives with the disease. The study includes the following:

  • Understanding the benefits of exercise in PD
  • Studying the role of depression and anxiety in the overall health of a person with PD
  • Analyzing why PD is managed differently depending on where a person receives their care

Get Involved

One way to help the National Parkinson Foundation raise money is by starting a Team Hope fundraiser, which means planning your own event or participating in an endurance race.

You and your loved ones can also participate in Moving Day, which is held in various cities in the United States. This fundraising event encourages any type of "movement" like yoga, tai chi, pilates, and walking.

Resources

A valuable resource provided through the NPF is their local NPF chapters which provide access to support groups and exercise and wellness classes within a person's own community.

In addition, through their website, you can find NPF Centers of Excellence which are located throughout the country. These centers are academic medical clinics that provide care for those with Parkinson's. They also engage in Parkinson's-related research.

In fact, some of these centers offer clinical trials that a person with Parkinson's disease can enroll in, if eligible. Furthermore, certain centers offer Parkinson's-specific therapies, like physical therapy, occupational therapy, speech therapy, and counseling. Some centers also offer surgical treatments for PD, like deep brain stimulation, and a procedure that entails delivering a gel formulation of carbidopa/levodopa (Duopa) through a tube in the small intestines.

American Parkinson Disease Association

The American Parkinson Disease Association, or APDA, was founded in 1961 and has spent more than $170 million in providing education, promoting awareness, supporting research, and offering services to people living with PD.

Research

The APDA has funded $46 million in research to date and currently maintains eight Centers for Advanced Research which are located in major academic medical facilities across the United States. Every year, they also award individual research grants and fellowships to scientists studying Parkinson's disease.

Get Involved

The ADPA offers the Optimism Walk, a fundraiser that encourages a walk (between one and three miles) in various locations throughout the country.

You can also navigate their website to read people's Stories of Optimism. These stories are people's moving accounts of how they have learned to live well and live positively with PD. You are also welcome to share your own story which can be therapeutic for some people.

Resources

Like other foundations, the educational resources are plentiful and include:

  • A nationwide system of chapters and information & referral (I&R) centers
  • Over 30 educational brochures and pamphlets that are free and can be mailed to your home or read on the computer
  • A seasonal newsletter
  • A toll-free hotline (888-606-1688) that is managed by a licensed physical therapist who offers information about exercise in PD

Parkinson's Disease Foundation

The Parkinson's Disease Foundation, or PDF, cites their ultimate mission as one of discovering the cause of and cure for Parkinson's disease.

Research

PDF is currently supporting more than 40 scientific programs and projects for a little over $5 million. More specifically, they support research at three impressive academic medical centers:

  1. Columbia University Medical Center (New York, NY)
  2. Rush University Medical Center (Chicago, IL)
  3. Weill Cornell Medical Center (New York, NY)

They also provide research funding and career development awards to select scientists and medical fellows who have an interest in PD.

Get Involved

One way to get involved with the Parkinson's Disease Foundation is to display parts of the Parkinson's Quilt Project. This quilt was created by more than 600 people who shared their experience with PD through drawings, pictures, words, and symbols. Now, you can rent panels of the quilt to raise awareness in your own community.

Another meaningful way to get involved is to share your story if you have PD or raise funds as a PDF Champion.

Resources

The PDF offers a number of thoughtful resources for those with PD and their family members, friends, and/or caretakers. Some of these include:

  • A national helpline staffed by Parkinson's experts that are available to both those living with the condition and their loved ones
  • A "train the trainer" program for nurses and physical therapists to optimize the care of people with Parkinson's
  • Engaging online seminars for anyone who wants to learn about Parkinson's

A Word From Verywell

Of course, there are a lot more charities, organizations, advocacy groups, and societies that support Parkinson's disease than those mentioned here. But, you are already doing your due diligence by looking into the specific foundation that fits your expectations. (If these do not, please continue searching.)

Remember, choosing to work with a specific foundation is a two-way street. While you give your precious time, money, and energy to an organization, be reassured that you will gain something in return—maybe knowledge, a new friendship, cherished memories, or simply a sense of peace.

Source:

Schrag A, Horsfall L, Walters K, Noyce A, Petersen I. Prediagnostic presentations of Parkinson's disease in primary care: a case-control study. Lancet Neurol. 2015 Jan;14(1):57-64.

Continue Reading