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Davis Phinney Foundation

The Davis Phinney Foundation is dedicated to helping people with Parkinson's live well today through our free programming, content, and quality of life research. Your generosity will help us inspire and educate people affected by Parkinson's, the fastest-growing neurological disease in the world.

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Every Victory Counts manual

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizens
General Public
Other Named Groups
Physically Disabled

Description

Unique in the world of Parkinson's resources, the Every Victory Counts program informs and inspires people living with the disease - including care partners and family members - to take control of their own Parkinson's treatment through proactive self-care.

The Every Victory Counts manual is a photography-rich, interactive manual developed by the Davis Phinney Foundation in collaboration with co-authors Dr. Monique Giroux and Sierra Farris, experts in Parkinson's treatment and self-care. It features contributions from leading movement disorder experts from respected institutions across the country. More than 50 people with Parkinson's share their personal insights and experiences, lending authenticity and a welcome sense of humor.

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Evidence of Program's Success

To date, approximately 40,000 copies of the Every Victory Counts manual have been distributed world wide.

"I've found that the binders that are handed out at the Symposiums are some of the best information around on Parkinson's."
-G. Cambell

"The binder of materials almost reminds me of a Parkinson's bible." -K. Yonak

"The manual is the most honest, insightful, inspirational, and genuinely helpful compilation of information I've seen about Parkinson's.  Every doctor who tells a patient they have Parkinson's should make sure that person leaves their office with an Every Victory Counts program manual. It's a support group in a book."
-T. Harrigan

The Victory Summit

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizens
General Public/Unspecified
Other Named Groups
Physically Disabled

Description

The Victory Summit® symposia series brings local communities together for a moving day of information and inspiration. Internationally recognized researchers, clinicians, and physical therapists in the movement disorders field present on timely topics, focusing on the things people living with Parkinson's disease can do today to improve the quality of their lives. From learning about the latest research and treatment options to participating in demonstrations of yoga, speech therapy, exercise programs, and other activities, attendees experience an uplifting day of learning and connection. The Victory Summit events deliver up-to-date information and practical tools that people with Parkinson's can use to make lasting, positive impact on their wellness. Since its debut in 2008, The Victory Summit symposium has engaged tens of thousands of people affected by Parkinson's, including care partners and families.

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Evidence of Program's Success

In 2018 4,265 people attended The Victory Summit events in six cities across the U.S. and Canada and through out digital broadcast.

The power of the Davis Phinney Foundation to positively affect the lives of those living with Parkinson's, their care partners and families is clear. Recent reviews shared by The Victory Summit symposia participants include:

"I left this event with the knowledge and hope of how to live well with my Parkinson's."

"This has empowered me to face my future and not see myself as a Parkinson's victim."

"I am the only one I know with Parkinson's. Today I learned that I am not alone."

Sidekicks

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adolescents/Youth (13-19 years)
Adults
Aging, Elderly, Senior Citizens
Children (4-12 years)
Disabled

Description

Sidekicks is an intergenerational program that brings together youth and people with Parkinson's to share their stories in fun and creative ways that promote mutual understanding and foster connection. In four highly interactive sessions, Sidekicks offers a variety of opportunities for creative expression that help participants learn new things and gain insights into one another's experiences.

People living with Parkinson's may experience daily challenges. Symptoms of Parkinson's - such as difficulty walking, tremor, difficulty speaking or swallowing - can affect favorite activities, social connection and spending time with friends and loved ones.

The goal of Sidekicks is to foster positive, meaningful connections between youth and people with Parkinson's. The program provides an opportunity for people with Parkinson's to open themselves up to a unique experience to connect with the community. Youth participants in Sidekicks also have a lot to gain; an understanding about Parkinson's, learning ways to practice a positive mindset and to understand people with different experiences than their own - including those with neurological disorders like Parkinson's.

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Evidence of Program's Success

Sidekicks will foster intergenerational relationships, and will allow the participants to express themselves and gain insights into one another's experience.

"We strive to inspire progress in Parkinson's through partnerships and programs that make a difference in the community," said Lorena Di Carlo, vice president and general manager, Neurology, at Lundbeck. "There is a common feeling of isolation among people with Parkinson's, and intergenerational programs like Sidekicks can help inspire positivity in living with Parkinson's while creating greater understanding for youth of what it's like to live with this condition."

The program's success will be evaluated by voluntary surveys given to participants before and after the program. Sidekicks is scheduled to launch on Saturday, May 12, 2018.

Quality of Life Research

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizen
Aging/Elderly/Senior Citizens
Disabled, General or Disability unspecified
People/Families of People with Health Conditions

Description

The Davis Phinney Foundation funds research aimed at discovering the most promising therapeutics and lifestyle choices that promote living well with Parkinson's disease today and every day. We fund early-phase, innovative studies that focus on exercise, speech, movement and other factors that affect quality of life. Our goal is to generate pilot data that demonstrates proof of concept, which leads to future funding by the National Institute of Health and others. Annually, 10% of our budget goes to fund innovative Research aimed at improving the quality of life for people with Parkinson's. We fund early-phase, innovative studies that focus on exercise, speech, movement and other factors that affect quality of life.

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Evidence of Program's Success

Pilot data generated from a study on depression demonstrated proof of concept and was funded by the National Institute of Health; another small study on alpha synuclein resulted in Michael J. Fox Foundation funding.

2014 research awardee, Dr. Ray Dorsey, presented poster session on research at the 19th Annual International Congress of Parkinson's Disease and Movement Disorders.

From a number of top quality research applications in 2015 (36 applicants from across the United States and 1 international proposal), 6 were asked to submit full proposal requests, and one has was chosen for funding last year: Dr. Jay Alberts, "Dual Task Intervention Using a Virtual Reality Assessment to Improve Motor and Non-Motor Function in Individuals With Parkinson's Disease." Up to $99,035 funded this quality of life research project.

Ambassadors

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging, Elderly, Senior Citizens
Disabled
People/Families of People with Health Conditions
People/Families with of People with Physical Disabilities

Description

Our ambassadors are dedicated volunteers who embody our philosophy of living well today with Parkinson's. Ambassadors share our resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson's.

Established in 2015, the Davis Phinney Foundation ambassador program brings together people who are passionate about our mission of helping people to live well today with Parkinson's. Our ambassadors are advocates for living well, who are available to discuss tools and strategies for improving quality of life with Parkinson's with support groups, individuals, families and healthcare professionals. Ambassadors speak on the subject of wellness at local Parkinson's events and support groups, as well as meet one-on-one with individuals and families.

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Evidence of Program's Success

As of December 2018, there were 38 Ambassadors across 21 states.

They have had up to 15,000 meaningful impacts with the Parkinson's community in 2018.

Ambassadors have distributed over 3,000 Every Victory Counts manuals to people affected by Parkinson's.

Parkinson's Exercise Essentials: Getting Started, Staying Motivated, Seeing Results.

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizen
Aging/Elderly/Senior Citizens
People/Families of People with Health Conditions
People/Families with of People with Disabilities

Description

Parkinson's Exercise Essentials: Getting Started, Staying Motivated, Seeing Results developed by the Davis Phinney Foundation, is a first-of-its kind video that provides a range of workouts that can be modified for any level of fitness, from beginner to advanced, and can be performed at home, in a fitness center or out in the community.

More than an "exercise along" video, this program goes one step further and provides a road map that will teach you how to safely progress exercise activities over a period of years in order to help you stay motivated and derive the greatest benefit from your workouts.

The goals of this program are to respond to people with Parkinson's inquiry "how does one exercise for Parkinson's?" and to motivate them to integrate exercise into their therapeutic approach.

In this video, Matthew P. Ford, PT, PhD from The University of Alabama at Birmingham provides the guidance to help people with Parkinson's get started with fitness and shares a range of exercise approaches drawn from a broad body of research and his experience working with members of the Parkinson's community.

Thirteen men and women of different ages, living with various stages of Parkinson's disease, demonstrate a range of exercise routines and share their inspiring personal stories, offering encouragement and first-hand insight into getting started and sticking with it.

Photos

Evidence of Program's Success

Since production in October 2013, more than 23,013 copies have been distributed

"After my dad's diagnosis of PD in the fall of 2013, I wanted to find some way to help. In googling the disease, I found your website and ordered the DVD about research and exercise. With that encouragement, I found a personal trainer in my dad's hometown who specializes in PD fitness. Recently this article was written in the local paper about my dad's progress with exercise and a Hershey Medical Center research project.
"Thanks for the info and support for this disease. Keep up the good work!"

Living Well Challenge

Class

Diseases, Disorders & Medical Disciplines 

Beneficiaries

Adults
Aging/Elderly/Senior Citizens
General Public
Other Named Groups
Physically Disabled

Description

The Living Well Challenge is a free, educational webinar series featuring movement disorder experts speaking to people affected by Parkinson's disease on topics of interest like swallowing, emotional health, cognitive issues, digestive symptoms and steps people can take to improve quality of life today. These free, bi-monthly webisodes are available on the Davis Phinney Foundation website, as well as on our Vimeo channel. All content is available anywhere in the world free of charge.

Photos

Evidence of Program's Success

Evidence of program success comes from collected data and viewer feedback.

Since 2010, 39,866 people have viewed the Living Well Challenge Videos.

The feedback we receive from our viewers is the most important evidence of this program's success. Here is what they are saying:

"We all need refreshers, and this not only provided new information, but also a reminder of some things we already knew, but tend to forget."

"Especially relevant for newly diagnosed individuals. Davis is such an inspiration to me personally with his honest and "real" persona. Thank you!"

"It answered so many questions, gave practical guidelines, provided helpful workshops, and was very positive without being fluffy and unrealistic."

"There was good information shared and with enthusiasm. Especially good for someone relatively new to their Parkinson's diagnosis."

"You incorporated almost every area of how Parkinson's affects a person."

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