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PARKINSON RESEARCH FOUNDATION INC Organization Name provided in the GuideStar Exchange* as of 10/30/2014: PARKINSON RESEARCH FOUNDATION INC

Organization Name as listed in the IRS Business Master File as of 12/08/2014: PARKINSON RESEARCH FOUNDATION INC

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AKA  Parkinson Research Foundation, Inc
Sarasota, FL
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GuideStar Summary

&1002; GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

PARKINSON RESEARCH FOUNDATION INC Organization Name provided in the GuideStar Exchange* as of 10/30/2014: PARKINSON RESEARCH FOUNDATION INC

Organization Name as listed in the IRS Business Master File as of 12/08/2014: PARKINSON RESEARCH FOUNDATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Parkinson Research Foundation, Inc
Physical Address: Sarasota, FL 34232 
EIN: 20-0205035
Web URL: parkinsonresearchfoundation.org 
NTEE Category: P Human Services
P20 Human Service Organizations
E Health—General & Rehabilitative
E80 Health (General and Financing)
Ruling Year: 2003 


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Mission Statement

The MISSION of the PARKINSON RESEARCH FOUNDATION is to help find a cure for Parkinson's disease through funding research, while providing education and services that improve the quality of life TODAY for Parkinson patients and their caregivers.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

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Annual Revenue & Expenses

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October 2014)

Fiscal Year Starting: January 01, 2014
Fiscal Year Ending: December 31, 2014

Total Revenue --
Total Expenses --

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership

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October 2014)

MR Lawrence S Hoffheimer

Term:

Since Jan 2014

Profile:

Mr. Hoffheimer was a federal prosecutor with the United States Department of Justice and a practicing healthcare attorney in Washington, D.C. for thirty three years. During the course of his career he has represented numerous voluntary health agencies and healthcare delivery professionals.Mr. Hoffheimer formed and led the advocacy effort that resulted in the Congressional Resolution and Presidential Proclamation declaring the 1990s as ""The Decade of the Brain."" He founded the National Foundation for Brain Research which provided enhanced visibility for neurological disorders.Mr. Hoffheimer was asked by the National Parkinson Foundation to serve as its Washington counsel where he became a leader in the lobbying effort to pass the Morris K. Udall Bill, which provided $100,000,000 for research into the cause and cure for Parkinson's disease.He was elected President of the Parkinson Foundation for the National Capital Area during which time the foundation raised more than $2 million for medical research. In 2006, Mr. Hoffheimer moved to Sarasota and formed the Parkinson Research Foundation. He continues his lifelong commitment to the Parkinson community by playing an active role as chairman of the PRF.

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October 2014)

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Board Co-Chair

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October 2014)

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Board Leadership Practices (GuideStar Exchange,
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October 2014)
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in October 2014

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Programs

Program: Parkinson Place (GuideStar Exchange,
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October 2014)

Budget:
$400,000
Category:
Human Services, General/Other
Population Served:
Disabled, General or Disability Unspecified
Other Named Groups
Poor/Economically Disadvantaged, Indigent, General

Program Description:

Parkinson Place then a 7500 sq. ft. site opened September 2012 offering 16 programs per month. Today has grown to 11,000 sq. ft. offering over 80 free educational and participation programs each month to its members. PARKINSON PLACE is dedicated exclusively to the physical, mental, emotional and social needs of those living with Parkinson's disease. Offering special activities and social events that keep patients and caregivers engaged with life. Programs are instructed by licensed professionals and experts in the field. All participation programs are ability based and can be performed standing or sitting in a chair so everyone can participate. Open 9am - 4:30pm Monday through Friday, membership and classes are FREE.

Program Long-Term Success:

To increase physical function, emotional wellness and quality of life for those diagnosed with this progressive degenerative neurological disorder for which there is no cure. There is no data to quantify long term success of this program based on the natural progression of the disease the anticipated outcome without a cure is continued decline followed by death. To assure the best possible out come continued emotional and physical support for the patient and family remain the top goal long term for this program.

Program Short-Term Success:

Short Term goal of improved overall state by 75% within the first 10 visits.

Program Success Monitored by:

We track success by various means: surveys, personal interviews and testimonials, physician documentation noting physical and emotional improved status. Noted stress reduction and coping skills for Parkinson caregivers.

Program Success Examples:

One caregiver remarked "Parkinson Place has saved our lives! I don't know what we would have done without it!" Another Parkinson patient remarked "I have never been so happy, I have friends now and no one looks at me strange. They all understand what I am going through!" Another said "Miracles happen at Parkinson Place!"

Program: USF Center of Excellence, Tampa and USF Parkinson Clinic At Parkinson Place (GuideStar Exchange,
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October 2014)

Budget:
$58,180
Category:
Diseases, Disorders & Medical Disciplines, General/Other
Population Served:
Other Named Groups
Poor/Economically Disadvantaged, Indigent, General
Disabled, General or Disability Unspecified

Program Description:

Juan Sanchez-Ramos, MD, PhD, the only Fellowship Trained Disorders Specialist in the area, serves a the Medical Director of the PRF Center of Excellence, USF Tampa and Director of the USF Parkinson Clinic at Parkinson Place. With support from the Parkinson Research Foundation Dr. Sanchez-Ramos has expanded Clinical services to include the Parkinson Place location. The increased activity also includes experimental clinical trials and basic research in Parkinson's disease.

Program Long-Term Success:

Long term goals for this program is to have a world class research facility for Parkinson's Disease at the Tampa USF campus. We would like to see the cure for Parkinson's disease come from the Parkinson Research Foundation USF Center of Excellence.

Program Short-Term Success:

Short Term success for Parkinson Research Foundation is to increase our contribution to the USF Center of Excellence by double in 5 years.

Program Success Monitored by:

Program success is monitored by Doctor's notes and results from research and trials.

Program Success Examples:

Sarasota Manatee Medical News reported on research by Dr. Sanchez-Ramos the Medical Director of the Parkinson Research Foundation's Center of Excellence and his research team. In the journal Experimental Neurology, the team detailed how the cells in bone marrow can, at least in laboratory conditions, be coaxed to develop into immature neurons and glial cells — the supporting cells of the brain. The restructured cells also contain several neural proteins....In fact, the paper authored by Sanchez-Ramos and his colleagues has been something of a sensation in the world of neurological research. "Our paper now has more than 500 citations to it, so it's very significant," he noted.That means they could potentially be used to repair damage to the brain caused by Parkinson's and other conditions, Sanchez-Ramos said.

Program: Grant Program USF Tampa (GuideStar Exchange,
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October 2014)

Budget:
$11,220
Category:
Education, General/Other
Population Served:
General Public/Unspecified

Program Description:

The Parkinson Research Foundation will also establish a post-doctoral fellowship to train future generations of experts in Parkinson's disease. Training will include the diagnosis and treatment of a wide range of movement disorders, with emphasis on Parkinson's disease. The candidate will have the chance to work with Dr. Sanchez-Ramos and to collaborate with neurosurgery in treating patients who require deep brain stimulation. In addition, the candidate will have the opportunity to work at least 2 days a week in basic research in the laboratory of Dr. Sanchez-Ramos, with a focus on stem cell biology and regenerative medicine. The training program will be tailored to the unique goals of the candidate; however, those individuals who want to publish both basic and clinical research papers are most likely to benefit from this program. The Parkinson Research Foundation Fellowship is geared for the individual who plans an academic career.

Program Long-Term Success:

To encourage more researchers in the field of Parkinson's disease.

Program Short-Term Success:

To increase the grant program by double in 5 years.

Program Success Monitored by:

Number of students that qualify for the grant and finish their fellowship in the Neurology department.

Program Success Examples:

Program is new and has not produced data as yet.

Program: Research Grants (GuideStar Exchange,
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October 2014)

Budget:
$25,000
Category:
Medical Research, General/Other
Population Served:
Other Named Groups
Disabled, General or Disability Unspecified

Program Description:

The Parkinson Research Foundation has provided grants to Jeffrey Kordower, Ph.D., the Jean Schweppe-Armour Professor of Neurological Sciences, Rush University Medical Center. The University of Florida for a study about dance and aerobics as an alternative treatment for Parkinson's patients. The Neuroregeneration Laboratory at the McLean Hospital to enhance the imaging of neural cells vulnerable to Parkinson's disease. The Johnny Byrd Center to study immunotherapy of Parkinson's disease.

Program Long-Term Success:

To be able to increase the funding for other studies at the University of Florida and elsewhere in the 6 county area..

Program Short-Term Success:

The Parkinson Research Foundation latest grant of $30,000 for a University of Florida study about dance and aerobics as an alternative treatment for Parkinson's patients.

Program Success Monitored by:

Awaiting outcomes since this is a new program.

Program Success Examples:

That the outcomes produce evidence that dance and aerobic exercise produce significant positive changes in the progression of the disease.

Program: Web Site Programs (GuideStar Exchange,
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October 2014)

Budget:
$300,000
Category:
Human Services, General/Other
Population Served:
Disabled, General or Disability Unspecified
Other Named Groups
Poor/Economically Disadvantaged, Indigent, General

Program Description:

Parkinson patients, caregivers and the medical community are given free and easy access to the latest in Parkinson research, education and events. Parkinson Research Foundation uses two websites the first www.parkinsonresearchfoundation.org is our research and education site followed by www.parkinsonplace.org which is our local site that carries our video classes for Parkinson Patients and their caregivers. The classes cover the range of Physical, Emotional, Mental and social needs of those living with Parkinson's disease. Both site have an international reach and are visited by Parkinson patients as well as doctors, nurses and researchers from around the world.

Program Long-Term Success:

The long term success of this program lies in the ability to reach as many Parkinson Patients, Caregivers and those of the various Medical communities that deal with this debilitating disease. As knowledge of our sites increase the free help that many so desperately need will be available to them even though they live elsewhere in the world. Due to this the success rate could prove to be a 75% behavior change in the Parkinson patient and caregiver as to their quality of life. The medical community may be more informed about evidence based programs that really work in practice not just in theory.

Program Short-Term Success:

The short term goal of the sites is to increase knowledge of the condition, inform on the latest research and provide programs to improve the quality of life NOW for Parkinson patients and their caregivers. The ability to provide education and help for a shut in or a person outside an area where they can receive services to help improve their quality of life is an integral mission of the websites. If an individual follows the programs already on the sites they could increase their quality of life by a estimated 10% per program.

Program Success Monitored by:

Feedback from comments on the website, Facebook, Twitter and email we receive from the international Parkinson community, researchers and physicians.

Program Success Examples:

A researcher from China commented on the Parkinson Research Site about how he appreciated the latest news on Parkinson Research coming out on our site. He also appreciated the Ask the Doctor videos on the Parkinson Place site as well as the exercise videos that he can use in his research and recommend to Parkinson patients in China. Another person commented on the fun events we post from our social activities. She comments that "I am a shut in and really enjoy seeing people have a good time." She also said "I enjoy the Parkinson Power program, it helps me deal with my problems in a positive way. Thank You!"
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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

Accomplishments: 1. Provide funds for Parkinson Place, an 11,000sq. ft. multidiciplinary center in Sarasota Florida, dedicated exclusively to meeting the physical, mental, emotional and social needs of Parkinson patients and caregivers. Parkinson Place includes on site neurology, psychology, physical therapy, and free evidence based programs led by licensed professionals. 2. Provide ongoing empowerment, educational and support programs for Parkinson patients, caregivers and community. 3. Provides for free 7 different evidence based exercise programs to benefit Parkinson patients and caregivers. 4. Provide ongoing and updated sophisticated websites and free video webcasts to better serve the Parkinson Community locally, nationally and on an international level. 5. Provide ongoing educational conferences with faculty to include noted experts in the field. 6. Provide funding for research into a cure for Parkinson's disease as well as research for helping to improve the lives of those living with Parkinson's today. Top Goals: 1. Increase awareness and fundraising efforts to sustain and grow current and future programs to better serve the Parkinson Community. 2. Educate healthcare providers regarding Parkinson care management, cutting edge procedures and the latest therapies available.
For more in-depth information about this organization's impact, view their Charting Impact Report.
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