A Parkinson’s Songbird?

cropped-cropped-cropped-bothsidesnow-front-hires-08-231.jpgPeople ask why I have a picture of two overlapping zebra finches on the front cover of my book, Both Sides Now, A Journey From Researcher to Patient. I explain how terrified I have always been of birds, and how their role in providing researchers with an understanding of the pathways involved in Parkinson disease has changed my relationship with these tiny creatures. These male and female finches looking in opposite directions (Courtesy of the laboratory of Dr. Erich Jarvis at Duke) spoke to me of having seen Parkinson’s while looking from both sides of the white coat.

It’s been nearly 20 years since we reported the discovery that a single mutation in the gene for the protein alpha-synuclein caused Parkinson disease in a large family from a remote Italian village southeast of Naples called Contursi. We reported in our 1997 Science paper that all we knew about alpha-synuclein at the time was that “its equivalent protein in the zebra finch is thought to play a role in the process of song learning.”

In those 20 years, we’ve come a long way, with the Michael J. Fox Foundation now calling alpha-synuclein “the most promising target for a disease modifying therapy.” Millions of research dollars having gone into clarifying why it clumps into the Lewy bodies found in everyone with PD and into exploring different ways that we might counteract its detrimental effect.

In my book’s Postscript, Gone to the Birds… I tell of visiting the laboratory of Dr. Erich Jarvis, a neurobiologist and former dancer who studies the relationship between movement, song and the origin of language:

“I’d like to see a mutated alpha-synuclein gene inserted into a songbird,” I quipped to Dr. Jarvis, trying to envision what the results might be. I thought I had posed an impossible problem, as I couldn’t imagine the process of inserting a foreign gene into an embryo that had a protective eggshell.

“Oh, but we are trying to make transgenic zebra finches,’ he told me, reflecting on the work of his colleague Fernando Nottebohm at Rockefeller University…”

Now, researchers in Dr. Nottebohm’s lab report successfully inserting a disease gene into songbird eggs. “Finches provide clues for Huntington’s disease” read the headline from Medical News Today referring to a study published online 5 October 2015 (doi:10:10.1038/nn.4133) in which Liu et. al. created birds with both a motor and vocal disorder. A transgenic Parkinson disease bird should soon offer yet another tool for our development of therapeutic strategies.

Day of Hope at Overlook Hospital

I thoroughly enjoyed speaking at Dr. Roger Kurlan’s Day of Hope at Overlook Hospital on September 19th. I had a  few fun slides such as this “Genetics 101.”

lightbulb genetics

I used my “Big Kahuna” to emphasize that the Michael J. Fox Foundation calls our breakthrough in identifying alpha-synuclein the “most promising therapeutic target for Parkinson disease.”

Big Kahuna

I  began the talk with having chaired a London meeting of parkinsonologists even as I realized I was developing PD. Finding Michael J. Fox’s book at Harrod’s was a lifeline for me—I needed to know if I would ever again feel “lucky.”  Having reviewed some promising therapeutics in development, I concluded saying that I’m still working on getting to “Lucky,” but I HAVE gotten to “Hopeful.”

Hopeful Woman2

Countdown to Portland

MTHA Book signing—cropped

It’s not yet September 2015 and everyone is gearing up to September 2016 and the 4th World Parkinson Congress  (WPC) in Portland, Oregon.  Two fellow “Parkies,” Jon Palfreman and Dave Iverson, are launching a must-see, free, downloadable podcast series: Portland Countdown. Beginning  June 2nd, on the first Tuesday of every month they will interview a cross section of individuals about Parkinson’s. The aim of the series is to educate the community about this  high-level, non-denominational conference which gathers the scientists, persons with Parkinson’s (PwP), and their families to share the very latest information about Parkinson’s, from day to day management to the very latest research into treatments. I met  WPD Executive Director Elizabeth Pollar (“Eli”) at April’s Parkinson’s Unity Walk in Central Park and was so impressed with her “ya’all come” philosophy. With her work on the World Parkinson Congress (WPC), she unites the varied Parkinson disease factions—you go, Eli girl!

I’m excited just thinking about the potential for sharing information and, what Jon called in  The New York Times article, “The Bright Side of Parkinson’s.” I  hope to see all my old friends in Portland—AND, to make many new ones.

In the interim, I’ve been getting wonderful press coverage, the most recent, an article by Susan Livio in The Star-Ledger.

Media can be irresponsible!

In a Medical News post, the headline read, “Mexican researcher close to finding a cure for Parkinson’s disease.” Then the last sentence qualifies that it “could even act as a cure.”

Well, I’m as anxious for a cure as the next guy, and am excited with some recent developments, particularly as result from my team’s discovery of the first Parkinson’s mutation in alpha-synuclein—I’m even intrigued by the mechanism described in the article as I’ve long suspected calcium’s involvement. (I once served as a control for a study measuring intracellular calcium and was so “off the chart,” that I skewed the data terribly. It’s significance has sat in the back of my thoughts ever since I developed Parkinson’s 10 years ago.) So, I laude Caraveo and Lindquist clarifying a mechanism tied to calcium! :)

But, the headline here is rather an over-reaching claim, and a disservice to the PD community…Let’s hope it does pan out!!

The Arizona Three

Keynote Speaker at Arizona APDA Optimism Conference

Just returned from Arizona (read: NO SNOW!) where I was Keynote speaker on Sunday. March 15th for the First Annual Optimism Summit and Expo. Sponsored by the Arizona chapter of the American Parkinson Disease Association at the Westward Look Resort and Spa, it brought hundreds of Parkinson Disease individuals and families together for a weekend full of events planned to educate, entertain and help families find ways to manage their day-to-day lives. I found a lot to learn myself and made some wonderful new friends—kudos to Executive Director Sarah Jones and her team for pulling together such an ambitious program in just a few short months. Arizona’s PD families are indeed lucky!