Parkinson’s Through the Eyes of a Child

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New book by Soania Mathur.

Why does mom shuffle and stagger when she walks? What makes grandpa’s hand shake? Will grandma die of Parkinson’s disease (PD)?

When there is a diagnosis of Parkinson’s disease in the family, these questions may be on everyone’s minds.  If we imagine the experience through the eyes of a child, it is easy to see how such questions can be even more overwhelming.

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Let’s Talk About Sex … and Parkinson’s

Who’s talking website-living-pd-masthead_smallabout sex and Parkinson’s disease? Despite the challenges that some people with Parkinson’s face in regards to sexuality and intimacy (one study showed 87 percent of people with PD experience some sort of issue related to sexuality) the conversation on the topic has been sparse.

That is why PDF hosted a webinar on the topic last September with Gila Bronner, M.P.H., M.S.W., C.S.T, which has been viewed by more than 2,000 people. And it’s why why we noticed last week when comedy writer Marc Jaffe published an essay published in the New York Times, Finding Equilibrium in Seesawing Libidos, covering this sensitive topic of sexuality and PD.

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Funding the Future of PD Science: Q&A with Student Fellow William Johnson, M.S.

johnson_will_summerfellowHow did you spend your summer vacation? The students supported by PDF’s Summer Student Fellowship Program — a group that includes undergraduates and medical students — spend their summers working on PD-related research projects with mentors who have expertise in the field.

Typically, fellowships are offered for 10 weeks with an award of $4,000. Recently, we sat down with former Fellow Will Johnson, M.S., a pharmacology student at Case Western Reserve University, who was awarded funding in 2013, for a project entitled, “Investigating the role of enzyme mediated neuronal protection in Parkinson’s,” to hear about his summer and what he learned about Parkinson’s disease in the process.

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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.

pam_tshirtcontest15_johnson_mabelJust 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 of which were drawn by hand, honored loved ones living with Parkinson’s disease, including parents and grandparents.

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From Skin Cells to Brain Cells: How PDF Fellows Are Using Genetics to Move the Field Forward

For the past three years, the Parkinson’s Disease Foundation has been funding the research of young scientists in the New York metro area through our Lucien Côté Clinical Genetics Initiative.

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Dr. Beck (VP, Scientific Affairs, PDF), Dr. Pan and mentor Dr. Yue; Dr. Li and mentor Dr. Noggle; and me.

It’s exciting because in studying how genes are affected by Parkinson’s, we can learn more about what goes wrong with PD overall … even in cases without a genetic cause.

Last Wednesday, we had a visit with two awardees and their faculty mentors at PDF’s office to get an update about their research. Both awardees are using an experimental technique called “induced-pluripotent stem cells” where they can actually take skin cells from a person who lives with PD (caused by a certain genetic mutation) and transform them into brain cells!

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

Myra HirschhornLast 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.

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