Blog Archives: Getting Involved

Gil & Kirk Agree, Palliative Care Should be
Priority for Researchers

Which question about living with Parkinson’s is your priority for scientists to answer? For PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL, the answer is: understanding how palliative care can help people with PD. Gil and Kirk separately completed PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. It turns out that they chose the same topic. We interviewed them to find out why studying palliative care is so important.

The Power of the Pen Against Parkinson’s

“Parkinson’s disease is a mimic. It is also a snowflake; no two incidents being identical in symptoms,” writes Gil Thelen, a PDF Research Advocate and longtime newspaper editor from Tampa, FL. With these words, printed last week as part of his Op-Ed, Mr. Thelen has proven how powerful a tool the pen can be in the fight against Parkinson’s.

Cindy Says, #MyPDPriority is Dystonia

Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia. As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in… read more Read More

Kid-Designed Parkinson’s T-Shirt Contest A Work of Art For All

Everyone is ready to wear their heart on their sleeve for Parkinson’s after the Kids Only PD Awareness T-Shirt Design Contest! The contest illustrated how everyone, no matter their age, can help to make a difference in the fight against Parkinson’s. Just last week, the public voted for, “Together we can fight Parkinson’s,” a design created by 7-year-old Mabel Johnson, from among six finalists (see all the designs in the slideshow below), to be featured on the official 2015 PD Awareness T-Shirt. Mabel’s design was among nearly 40 endearing designs submitted by children ages five to 15. The designs, most… read more Read More

Two New Drugs for PD: A Caregiver & Advocate Speaks Out

Last month, it was announced that two new drugs were approved by the US Food and Drug Administration, for treatment of Parkinson’s disease (PD). Both drugs, Rytary™ and Duopa™, are updates to carbidopa/levodopa. They offer, respectively, a newer formulation and delivery method to reduce off-times for those with PD. In this Q&A, PDF speaks with Myra Hirschhorn, one of our trained Research Advocates, to understand the community reaction to the approvals. As part of the Parkinson’s Advocates in Research program, Myra has been trained in the drug development process, and educates her community about research.

Pancakes for PD: Q&A with Students from Liberty College of Osteopathic Medicine

On February 2, a group of future osteopathic doctors at the Liberty University College of Osteopathic Medicine (LUCOM) hosted Pancakes for Parkinson’s, a breakfast to raise awareness of PD and funds for PDF. The students, who make up the university’s chapter of the national Student Osteopathic Medical Association, welcomed 100 guests and raised $400. In this Q&A, Pranamya Mahankali, chapter leader, shares why the students got involved as PDF Champions, plus we link to a local news cast featuring the students’ efforts.