Voting Has Begun! Cast Your Vote for Fan Favorite

The entries for the 2010 Neuro Film Festival are in and public voting for “Fan Favorite” begins February 17, 2010. The Neuro Film Festival is a contest by the American Academy of Neurology Foundation to help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures. The entries highlight compelling videos from patients and their families and caregivers about living with a neurologic condition. Voting closes on March 17, 2010.

Voting is easy:

• Step 1: Visit youtube.com/neurofilmfest and log in using your YouTube username and password to view entries. If you don’t have an account yet, sign up now, it’s quick and easy! Gmail users can sign in using their Google username and password as well.
• Step 2: Once logged in, rate each video in the playlist using the star system in the lower left corner, near the play button. Comments have been turned off to allow each video to stand alone and ensure fairness in judging.

The winner of the Fan Favorite award will receive a $500 prize. Two other winners will also be awarded for their filmmaking skills and creativity, as decided by the festival’s jury. A selection of the top videos will be screened at the Neuro Film Festival in Toronto during Stop Brain Disorders Week beginning Sunday, April 11, 2010, in conjunction with the Academy’s 62nd Annual Meeting, the world’s largest meeting of neurologists.

This process has been rewarding because it’s helped keep up the momentum for our own documentary, and I’ve gotten to know some incredible people. Elise Ricci is the main force behind the documentary segment, and the two of us have been meeting regularly to discuss the purpose and feel for this piece. Aside from filming our own story, Max and I filmed the Nornes family and through that befriended another local COYOD named Arlene. Arlene’s father Pete is a retired commercial fisherman and is now living with Young Onset Alzheimer’s.

Me, Arlene and Pete Nornes eating smoked crab

Elise and I met up with Arlene and Pete down at the Fisherman’s terminal in Ballard back in December to film the “Annual Holiday Smoked Crab” event. I felt a strange sense of belonging down at that terminal- hanging with a bunch of Norwegians (I’m part Norwegian myself) and eating seafood that I thought, “I love how filming can carry people to so many random and beautiful situations…” I am confident this documentary piece will indeed be hopeful.

For more information on the breakfast, visit this link.

However, despite our stagnant blog, we have been very active offline here in Seattle. And now with a new place and name for this blog, we will share all things relating to Young Onset Dementia from here on out.

We encourage those who are curious what we’ve been doing the past few months to watch our latest SpokeTube video “Spoke Your Mind: In a Nutshell”.

Updates to come…

-Emily and Max (pictured below with our dads)

Check it out:  “My name is Lisa”.

We’re currently working on a video update that will explain Spoke Your Mind’s past, present and future. So stay tuned for that sometime in November…

I encourage everyone to watch this simple and powerful clip by Alzheimer’s Disease International.

Max, Kendal, Me and Amelia

The two influences for Kendal’s trip were his grandmother who died from Alzheimer’s and his uncle in Alabama who is living with Frontotemporal Dementia (FTD). Kendal’s cousin and cousin-in-law flew in from Alabama for his party, so we got to meet these “COYOD” briefly. They told us they saw our video on The Wedekings, and that it was a very difficult to watch considering their dad is still in the earlier stages of FTD- whereas Vaughn Wedeking was much further along. However, they also said that as hard as it was to see the progression of FTD in Vaughn, it began conversation around planning within the family. As Max and I listened to their situation, we were amazed that a family in Alabama was using our video in some capacity to learn more about their own father. But it was tough to stand there and know that the video also created negative emotions because of course it’s not easy to watch later stages of a disease when you’re not yet there with your own parent. We just hope the videos, and the videos that we will make post-tour, will encourage action and bring understanding. All-in-all it was an incredible evening and we were thankful we were in town for it.

WE LEFT NYC THURSDAY AT 5AM AND SINCE THEN HAVE RUN INTO SOME GOOD LUCK. WE HAVE A NEW FUNDRAISING TECHNIQUE WITH PIGGY BANKS ON THE FRONT OF OUR BIKES THAT READS: DONATIONS FOR YOUNG ONSET DEMENTIA. SO FAR THE PIGS HAVE DONE THE FOLLOWING:

-RAISED $153

-ATTRACTED A COYOD WHO HOSTED AND FED US, AND WE INTERVIEWED HER AND HER FANTASTIC FAMILY

WE ALSO CAMPED AT A MENONITE FAMILY’S DAIRY FARM.

THANKS PIGS!

THIS FONT KEEPS GETTING BIGGER.

ALMOST TO DC.

MORE TO COME…

#1. Walking around the city

Times Square

#2. Meeting local COYOD

Max, Michael and Em

We met Michael Tuesday night and learned about his story. Michael’s dad was diagnosed with Frontotemporal Dementia (FTD) in February. We spent the evening sharing COYOD stories, capturing it on film, and eating Indian food. We were lucky we were eating during the crazy thunder storm that blasted through the area we were in and took out 100 trees in Central Park.

#3. The Metropolitan Museum of Art (the “Met”)

Looking at the Roxy Paine installation at the Met museum.

On Wednesday we interviewed Deborah Gaffe, a museum educator who helps run a program specifically for people with dementia and their caregivers called “Met Escapes”. After the interview we walked around the gorgeous galleries for hours.

#4. Being an NYC Alzheimer’s Association groupie

Paulette Michaud, Max, Em, Jason, Karen and Lynn

Someone joked that they’ll need to add a desk for us soon. We spent most of Thursday at the office. Paulette Michaud, the director of early stage programs, scheduled us an interview with a woman diagnosed with Young Onset Alzheimer’s named Karen (pictured above). Karen is a huge advocate for people with Alzheimer’s, and speaks to various audiences with Paulette. They call themselves the “Paulette and Karen” show. After we joined Paulette and Karen in a “Memory Works” class for people in the early stage of Alzheimer’s. Paulette leads the class with different memory and brain activities. It was a riot. The humor and camaraderie among the group is contagious. Even though we were only observing, the exercises were tough even for Max and I. As Karen mentioned in the interview, she looks forward to this weekly class because it allows her to feel “normal”.

After a quick lunch we popped into a training for non-family caregivers led by Nancy Hendley. Max and I told the group about the project, and it wasn’t until midway through the conversation that someone stopped us to clarify that we were on our bicycles. This was incomprehensible, and the reaction was priceless. After lots of laughter we got to learn a technique that’s called “hand-in-hand”. It’s difficult to explain in words, but will share it soon on film.

#5. Attending a discussion about the HBO Alzheimer’s Project with Producer John Hoffman

Em, John Hoffman, Max

Our finale to Thursday was going to the public library’s auditorium for a Q&A with HBO producer John Hoffman and Alzheimer’s Association’s Matt Kudish. We briefly met John, who learned about our project from Matt Kudish. John’s own father had Alzheimer’s, and he expressed that at first he was initially hesitant to do this project because of his fears of facing such a depressing disease. But as he was working with the NIH (National Institute of Health) on another HBO documentary, the scientists there pushed for an Alzheimer’s special because so there’s so much advancing in the area. So ultimately John could no longer run away from Alzheimer’s and dove straight in with the HBO series. He explained that the process of producing the project and learning about the “momentum in science” offered him hope. We thanked both John and Matt for their incredible work.