Shake, Rattle & Roll for PD: Q&A with A.C. Woolnough

PDF Champion A.C. WoolnoughA.C. Woolnough doesn’t let Parkinson’s disease get him down. He’s been actively involved in the fight against PD since his diagnosis in 2014, in part by volunteering with the Parkinson’s Disease Foundation (PDF).

He is not only a member of the PDF People with Parkinson’s Advisory Council, and one of our Research Advocates, he is also a member of our Creativity and PD Project.

Now he’s adding another volunteer role to his long PD volunteer resume — fundraiser. He is putting his passion for golf to work as a PDF Champion next Saturday, September 5, when he will host Shake, Rattle & Roll in Sandpoint, ID, a golf tournament to benefit PDF.

What drives A.C. to be so active in the community? Hear from him in our interview below.
read more Read More

Transformation, Creation & Life with Parkinson’s: Q&A with John Creveling


John and wife Christina

How did you spend your summer vacation? John Creveling, a PDF Research Advocate from Philadelphia, PA, spent it sharing his story with the Parkinson’s disease community.

At the beginning of the month, John’s story was featured in Neurology Now, a magazine widely featured in doctors’ offices and read by people living with Parkinson’s disease and other neurological diseases.  Just a few days later, the Parkinson’s community voted for John’s photograph, Transformation, to be featured on the cover of PDF’s 2016 Creativity and Parkinson’s calendar.

We sat down with John to hear about his own transformation into an advocate for Parkinson’s disease — one committed to living positively and creatively on the way to a cure.

read more Read More

Advocating for Equality in Science on Women’s Equality Day

logo_women_and_pd_2015_tintedA few months ago, the National Institutes of Health — the government institute that funds $26.4 billion in biomedical research each year — called for equal representation for females in scientific research studies … female mice, that is.

Today, as we mark Women’s Equality Day, equality for mice (and human women) in scientific research might not be the first issue that springs to mind. But it is an important one.

Why? Because when scientists test new therapies for diseases such as Parkinson’s, there are several steps to make sure they are safe and effective in humans. And experiments in mice provide early clues for which therapies might help people with PD and which might not.

read more Read More

You Asked & We’re Answering: Fatigue in PD


Dr. Joseph F. Friedman

Why is it important to solve fatigue in PD? First, it is a debilitating symptom experienced by many people with PD; yet it is difficult to diagnose and treat. Perhaps more importantly, it is a symptom that people with PD and care partners told PDF was important when voting in the first Community Choice Research Awards survey.

This past October, I was pleased to lead a PDF Conference on Fatigue in PD in Chicago, IL. Because this meeting and subsequent research were inspired by the community, my colleagues and I feel it is important to let you know what happened and the progress we have made so far. At our meeting last year, along with the best minds in fatigue in PD and other diseases (see our full group listed at end), we had four goals before us: determine what we know, what we don’t know, what we can learn from other disciplines, and most importantly, where we should go next.

read more Read More

Unmasking Nonmotor Symptoms of PD: Visiting Nurse Notes with Dr. Susan LaRocco

Image courtesy of Wendell Lowe, member PDF Creativity and Parkinson's Project.

Image courtesy of Wendell Lowe, member PDF Creativity & PD Project.

Do you wish your health team understood the impact of your “invisible” symptoms — the ones that we cannot see, such as fatigue, sleep disturbances and pain?  Susan LaRocco, Ph.D., of Curry College, an alumna of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at PDF, is helping to make that happen.

In 2012, Dr. LaRocco completed our “train the trainer” program, which prepares nursing faculty in Parkinson’s disease so they can, in turn, prepare their students. Dr. LaRocco’s final research project for the program recently resulted in a published article, “Unmasking the Nonmotor Symptoms of PD,” in Nursing 2015, a journal widely read by nurses across the US.  We sat down with Dr. LaRocco to learn about her work, how the program impacted her teaching, and why telling other nurses about nonmotor symptoms is so important.

read more Read More

Is a PD Support Group Right For You?

photo-advocates-pdfmaterialsWould you like to share resources and tips for living better with Parkinson’s? If so, joining a support group is one option to consider. For some people with Parkinson’s, support groups can be wonderful sources of information and social and emotional support. You may be wondering how to find a support group or, if there isn’t one nearby, how to start one yourself.

Our team at PDF is here to help.

read more Read More