my time in the Lone Star State

Long time, no update, I know. But enough of my internet silence (er… more just blog silence). What’s been happening here recently? well, I’m in my last day in Austin and we’ve got alot of work done. The editorial layout is beginning and we know what bits and pieces we need to get with the remainder of footage we need to shoot. Progress, but not out of the woods yet.
Still fund raising, so do check out the Donation page for more information. In the mean time, I’ll be grant writing, researching more grants, and flying out to Rochester, NY soon to interview Dr. Arthur Moss and see what’s new with the ICD registry, and maybe get a chance to head up to the sports registry at Yale.
Busy months ahead!

–Also!
An over due and a big shoutout is (over)due to Parents Heart Watch for hosting a fantastic conference! I met some truly amazing people, heard some heart wrenching and inspiring stories, and had an over all phenomenal weekend in New Orleans. Thank you for making such an experience possible!

Happy New Year!

Happy New Year! hope you all got to celebrate in style and with people you love.

New Stills

More stills from our last few shoots! Happy New Year everybody!

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Happy Holidays!

On this 1st night of Chanukah I’d like to wish everyone celebrating a very Happy Chanukah and may you have 8 beautiful nights with your friends and family!
And hopefully everyone is done with whatever holiday shopping they need and can get rest and relaxation in during their holiday.

Here’s some links that have brightened up my day and I hope they bring a smile to your face too.
NPR: Hanukkah Microbrews
The HOBBIT Trailer is HERE!!!!

and for everyone awaiting Dec 25th for whatever reason strikes your fancy (religious hullabaloo for JC’s birthday or family time around a big lit up tree and stories about a jolly rotund reverse-burglar, aka Santa)…

Mayo Clinic Screen Captures

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post Mayo Clinic

Our trip was definitely interesting. Being that this is a major climactic point of the film I can’t divulge too much in the way of information I can at least tell you that we got some phenomenal footage. The people at the clinic were fantastic to work with and we had full access to film all of my diagnostic procedures. A big big Thank You needs to go out to Traci, the PR rep who’s been working with us since this past summer.

Stills coming, more details later, working on sorting and tagging footage now.

x

Pictures from the Mayo Clinic

a mix of photos I took on my phone and screen captures.

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Mayo Clinic on Monday

We got the Mayo Clinic itinerary this week. We fly out there Monday (little leeway in case there’s any snow storms to delay us) and everything starts Tuesday. Here’s a quick run down of what’s in store.
Tuesday’s schedule (starting at 8am):
Echocardiogram
Chest X-ray
Signal Averaged ECG
CT Scan of my Heart
Electrocardiogram (EKG)
trip to the Pacemaker Clinic to meet with a Nurse Consult to turn off my ICD for the next test,
Exercise Treadmill Test (Stress Test)

Wednesday’s schedule (also starting at 8am):
-Holter Monitor
-meeting with Geneticist, Dr. Kirmani (looking into the possibilities of Ehlers-Danlos Syndrome being linked to our heart problems)
-meeting with Dr. Ackerman

As a director I’m very excited to get this footage. It’s going to be really amazing and I’ll get to really dive into the emotional aspects of what going through diagnostics can be like for a patient.

on the other hand…

I’m the patient. I have to go through it all over again and the some in two days… it’s alot to process and it’s bringing up things I thought I was over… but I guess I wasn’t quite done with all of that yet. I’m nervous but I’ll be alright.

Attack of the Post-its!

Hard at work starting the process of organizing all of the footage and prepping it for the editing room! Just wanted to give you an idea of what we’re up to in between shoots. Still hard at work plotting out how we’re going to enter into full blown post production mode.

originally posted at 2am –> yes, I am a nightowl

updated Donations Page

Just wanted to give a heads up on donation information.
If you donate you will still get AWESOME SWAG in return!
For details please visit our Donate! Page.
All previously made donations will still be honored, don’t fret. We’re assembling the email lists for extra updates (bonus videos that will only be accessible to sponsors of the project) and we will be sending out more swag as it becomes available.