National PD Resources not using

Listed below are links to sites with a wealth of information about Parkinson’s Disease for both patients, caregivers, and others involved with the PD community.  The sites include information regarding symptoms, status of current research,  information for caregivers, and information for clinicians.  They are great resources if you are newly diagnosed or an existing PwP. Many of the sites have an information hotline for quick answers to questions.  Information about each organization in italics is from their website, any normal text is from me. Click on the image to go to the website in a new browser tab.

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. 

Fox Trial Finder was created by the Michael J. Fox Foundation to help increase the flow of willing participants — both people with Parkinson’s and control participants who do not have Parkinson’s — into the clinical trials that need them, accelerating the Parkinson’s drug development process.

https://www.partnersinparkinsons.org/The Michael J. Fox Foundation for Parkinson’s Research & AbbVie have partnered to create a multifaceted strategic health initiative, called Partners in Parkinson’s, which aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future. Site includes a searchable database of Movement Disorder Specialists.

Fox Insight is an online clinical study to gather the world’s largest collection of data about daily life with Parkinson’s disease (PD) directly from patients and their families and friends.  Fox Insight is an exciting new opportunity for anyone who wants to impact and participate in Parkinson’s research.

For over half a century, the National Parkinson Foundation (NPF) has focused on meeting the needs in the care and treatment of people with Parkinson’s disease (PD). NPF has funded more than $180 million in care, research and support services. Unique among other Parkinson’s organizations, NPF has a singular focus — our mission is to improve the quality of care through research, education and outreach.

    NPF is your source for the Aware in Care kit, which has been designed to help deal with the problem of getting your medication on time when hospitalized.  The kit is free and can be ordered online or by calling NPF.

     The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s by funding promising scientific research while supporting people living with Parkinson’s through educational programs and services. 

      The Davis Phinney Foundation for Parkinson’s is unique in the Parkinson’s community. Our mission to help people living with Parkinson’s to live well today makes us so.  We are committed to supporting programs and research that deliver inspiration, information and tools that will enable people living with Parkinson’s to take more control in managing their disease. The Davis Phinney Foundation was founded in 2004 by Olympic medalist and cycling great, Davis Phinney, who was diagnosed with Parkinson’s disease in 2000 at the age of 40.

    The Davis Phinney Foundation on provides an excellent exercise DVD, available on their website for no charge.  The exercises are designed for and demonstrated by Parkinson’s Patients and includes a booklet you can download with diagrams etc. You can also download a copy of the Every Victory Counts workbook from the website.  

    Brian Grant is a retired professional athlete who played 12 years in the NBA After retiring and moving back to his adopted hometown of Portland, Oregon, Brian was diagnosed with Young Onset Parkinson’s disease in 2008 at the age of 36. In an effort to provide strength, support and inspiration to others who were affected by the disease, he decided to refocus the mission of the Brian Grant Foundation to empower people with Parkinson’s disease to live active and fulfilling lives. Today, Brian serves as both an advocate and an inspiration for those living with Parkinson’s.

     As the country’s largest grassroots organization serving more than 1 million Americans with Parkinson’s disease and their families, APDA’s energy is focused on research, patient services, education and raising public awareness.  Funding includes support of a national network of regional Information and Referral Centers, chapters, support groups, eight Centers for Advanced Research, and grants to fund the most promising research toward discovering the cause(s) and finding the cure for Parkinson’s.

    The Bachmann-Strauss Dystonia & Parkinson Foundation was established in 1995 to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease and to provide medical and patient information.  Louis Bachmann (1916-2000) and Bonnie Strauss founded The Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF) in 1995 as a nonprofit 501(c)3. The Foundation was started to encourage new scientific research in the fields of dystonia and Parkinson’s disease and to heighten awareness about the diseases. The Foundation is also the leading organization actively looking at the interface between dystonia and Parkinson’s disease. 

    The Cure Parkinson’s Trust was founded in 2005 by four people with Parkinson’s: Sir Richard Nichols, Air Vice Marshal Michael Dicken, Sir David Jones and Tom Isaacs. Their specific aim was to raise money to fund and facilitate research into finding a cure for Parkinson’s.  The Parkinson’s Movement site provides information and resources for Parkinson’s Patients in the UK and beyond.

     PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care. Patients like me is an excellent online support group that let’s you communicate with other Parkinson’s patients via a forum and allows you to track your symptoms, medications, etc.

    Whether you’ve been living with Parkinson’s disease (PD) for a while or are a newly diagnosed patient or are a carer of a patient…
    You shouldn’t have to take the Parkinson’s disease journey alone

    Get one-on-one PD education, support, and resources—at no cost. Our specially trained Advocates can reach out and help guide you through a more personalized approach to understanding your treatment and care options. 

    PDTrialTracker.info

     
    PDTrialTracker monitors and analyzes Parkinson’s disease clinical trials and observational studies that are in-progress, that is, i) currently recruiting, ii) active, but not yet recruiting,
    iii) enrolling by invitation or iv) active, not recruiting.  The analysis is presented in tabular and graphical formats to provide greater insight into the type and focus of trials underway. 

    This site shows PD Clinical trial information in several forms and includes breakdowns by type of trial (observational and interventional) and by location throughout the world.  A good source to find trials near you.

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