DREDF is one of many disability organizations which make up the beautiful and accessible Ed Roberts Campus, Berkeley, CA (Photo: Karl Nielsen)

Much exciting news to share from these recent months!

• Artist residency at ASU
• Pre-release screening in Lisbon
• Work-in-progress screenings
• 2013/2014 college screening tour, booking now!
• Film update

The editing is going great. To make sure we’re still on the right track, we have held two more work-in-progress screenings in the last month.  The first screening was with the staff of the Disability Rights Education Defense Fund (DREDF),  a leading national civil rights law and policy center and one of the oldest disability rights organizations in the country, founded in 1979; in other words, a group I deeply respect and whose opinions of the film I value highly.  The screening received a warm and enthusiastic response.  I asked a few of their senior staff to write their thoughts about the film afterwards:

“‘Fixed’ combines some of the most challenging questions facing the disability rights movement with the cutting-edge science of human enhancement. The result is eye-opening and raises provocative questions our civilization struggles to answer. Yet ‘Fixed’ doesn’t fail to fascinate, and communicates on so many levels. Everyone should see this film!“

– Marilyn Golden, Senior Policy Analyst, DREDF

“‘Fixed’ presents an incisive, balanced, and mind-bending look at the opportunities and challenges the technology revolution has wrought for the future of human culture and the meaning of being human… Beautifully edited with multiple dance sequences that transcend preconceived notions of disability and normalcy, ‘Fixed’ poses the question, ‘What sort of world do we want to live in?‘”  — Mary Lou Breslin, Senior Policy Advisor, DREDF

The second screening was with an undergraduate ‘Cyborg Anthropology’ class at UC Santa Cruz and was also well-received. You can read a few comments from their feedback forms below.

Arizona State University, Tempe, AZ

ARTIST RESIDENCY AT ASU

Other big news! I’ve been invited to be a visiting artist for two months at the Consortium for Science, Policy and Outcomes (CSPO) at Arizona State University. So at the end of February, I packed my bags (and hard drives) and made the journey from Oakland, CA, with my dear friend, Tiffany Worthington (also cameraperson for the very first day of Fixed production almost six years ago!).

After two days of driving, we reach Arizona!

A number of departments here at ASU have kindly co-sponsored my visit here. In addition to CSPO, many thanks goes to the Phd Program in Human and Social Dimensions of Science and Technology;  Center for Science and the Imagination;  School of Social Transformation; Center for Film, Media, and Popular Culture; Lincoln Center for Applied Ethics; Alliance for Person-Centered Accessible Technology (APAcT-IGERT) and the Center for Nanotechnology in Society, and especially to Clark Miller for his generous assistance coordinating this residency!

Papago Park, Tempe, AZ (two miles from my new home!)

Their support offers me valuable time to complete the final editing for Fixed and opportunities to hold a few final work-in-progress screenings and to discuss the film with faculty, students and staff. This will then lay the foundations for the curriculum I will be developing to go along with Fixed, once the film is completed. I couldn’t be more honored to be here and to learn from all of the cutting-edge interdisciplinary science and society research that is occurring on this campus. The gorgeous landscape to enjoy after a long day of editing isn’t bad either!

PRE-RELEASE SCREENING IN LISBON

In other news, Fixed has been invited to hold a pre-release screening at the Pavilion of Knowledge in Lisbon, Portugal!  I will be presenting the film at the kickoff event on March 26th, 2013, for the new European Commission-funded initiative, NERRI, Neuro-Enhancement: Responsible Research and Innovation. This event is being organized by Ciência Viva (National Agency for Science and Technology) in partnership with the Champalimaud Foundation.

Lisbon, Portugal

The NERRI project’s main objective “is to contribute to the shaping of the future of the Responsible Research and Innovation European Agenda in the field of neuro-enhancement through an intense mobilization and mutual learning process that engages scientists, policy-makers, industry and the wider public.” The initiative is quite new so they don’t have a website up yet, but please email me if you’d like to find out more details. I am thrilled that Fixed will be the film to kick off discussions for such an important project.

FILM UPDATE

We should hit “picture lock” within the next month! This means all of the editing will be done and the final music and graphics will be in place. After this point, it will take several months of fine tuning to complete the sound mix, color correction, online editing (conforming all the multiple formats of footage we are working with and creating an HD master), and having the film captioned and an audio descriptive track created, along with finishing the special features for the DVD. It’s getting closer every day!

2013/2014 FIXED SCREENING TOUR, BOOKING NOW!

We are starting to book a screening tour for fall and spring 2013/2014. If you are interested in having us visit your local university, please let us know as soon as possible. We’re booking up fast!

BUILD OUR COMMUNITY

In the meanwhile, please help build the Fixed community by signing up for our mailing list and/or joining our Facebook page, and by encouraging your friends to do the same. Once we launch the film, this will be crucial for getting the word out far and wide and making the film we’ve all waited so long for a smashing success!

Thank you for your patience and ongoing support.

With gratitude,

Regan Brashear, Producer/Director

Feedback from students at the work-in-progress screening at UC Santa Cruz:
“I really appreciate the opportunity to make class lectures real. This has solidified my knowledge and given me new paths of interpretation for many other discourses.”

“This film was shot and edited beautifully. I loved getting a new perspective on this technology and how these people feel about it. Interesting and executed brilliantly!”

“I think this film was great. I really want to work with disabled children when I’m older. I want to become a special education teacher and this film really touched me. I know it’s something I really want to pursue now.”

…and their lovely pooch, She-la

Meet my fabulous new housemates while I’m visiting Tempe, Celina and Jesse

Dozier Libbey Medical High School, on a rainy November day, 2012

“‘Fixed’ is entirely useful for my senior Medical Ethics course.  There are countless ways that my students can connect with the material presented in the film, from the issues that the disability rights movement raises about societal change and adaptive technology, to ableism and Eugenics.  The film is accessible, balanced, and while my students already have a background in the subject matter, there is also something entirely new here to help them stretch their thinking.  It is perfect for the classroom but also for anyone wanting to expand their knowledge on the subject or simply someone who wants to achieve a better understanding of the world we all live in.” – Stacey Wickware, U.S. History and Medical Ethics teacher, Dozier-Libbey Medical High School

On two rainy days this past November, I had the opportunity to venture out to Antioch, CA, to share the rough cut of Fixed with the senior class of  Dozier-Libbey Medical High School who were in the midst of a month-long unit on ableism in their medical ethics classes. Their response to the film was deeply gratifying.

As many of you know, this has been a six year long, epic journey to create this film. This was the first time I’ve shown it to an audience of young people. To hear in our discussions after each screening how it impacted these teens, shifting their perspectives on disability and inspiring them to rethink concepts of normal, abled, and disabled – and to know that this film will become a tool for many teachers around the country to do the same with their students – gave me goosebumps! Please check out some of their comments below. And since my sweetheart is a statistician, I couldn’t go home without collecting a little hard data as well. Here’s some of what we learned from the 125 students who saw the film from their surveys:

• I encountered new perspectives in this film that pushed me to think about these issues in a new way: 92% yes
• I’d like to learn more about the issues addressed in the film: 80% yes
• This film changed how I see people with disabilities:  85% yes
• Would you recommend this film to a friend or classmate:  98% yes

Dozier-Libbey Medical High School

Dozier-Libbey Medical High School is in its fifth year as a pathway public school, preparing students for health related careers, with a strong emphasis on science and math. They also include a robust one year medical ethics class which every senior is required to take, in which they study medical ethics history and abuses, prenatal testing controversies, genetics, new technologies, ableism, the history of the Eugenics movement, and more. The course is the brainchild of two phenomenal teachers, Stacey Wickware and Sarah Melvin. I was flattered to hear that they drew from the questions posed on the Fixed website to formulate their guiding questions for both the unit on ableism and the cross-curricular “Project E.D.D.I.E.” (where teams of students invent or redesign an adaptive technology in their Physics, English and Medical Ethics classes). Here are their guiding questions:

• Who and/or what are we trying to “fix”?
• Does society need to change to address the needs of the disabled or do we need to alter the person? 
• Is it really necessary to create assistive technology that allows a differently abled person to carry out a task the same way they did it before they were disabled or can we find a new way to address their needs? 
• Should adaptive technology strive to return people to “normalcy”? 
• What does it mean to be normal? 
• What does it mean to design “better humans” and do we want to?
  

Good questions, eh?

After each of the four screenings, the students, teachers and I brainstormed ideas for ways teachers could use the film in a classroom setting, from setting up debates, pairing with selected readings, an “opposing viewpoints” exercise, developing extended interviews with people from the film as video modules, having students pick one technology to research further, etc… Very helpful as I will be diving into developing a teacher’s guide once the film is completed!

The feedback from both the students and four teachers who saw it came at a perfect time right before launching into the final two months of editing. It was great to hear what parts were a little confusing and what parts struck them the most. While I don’t believe any documentary can ever be neutral, it’s my belief that the issues addressed in Fixed are hugely complex and don’t have any easy answers. Because of this, I don’t have a clear “agenda” like I have had in some of my earlier work. Rather, my goal here has been to open up space for new kinds of dialogue, to share a variety of perspectives, so that we can together begin to think through some of these major bioethical questions of the century. So it was affirming to hear students reflect that they felt the film was balanced. When asked if they could relate more with one person or perspective in the film, there was a wide range of answers, which I take as a really good sign. All in all, well worth the rainy journey!

What’s also fun is that we were able to arrange for one of the “stars” of Fixed, Fernanda Castelo, a test pilot with Ekso Bionics who lives in Palo Alto, CA, to make it out to Dozier-Libbey herself in mid-December to meet with the same classes for their final “Project E.D.D.I.E.” presentations to offer feedback on their inventions.  Ms. Wickware wrote afterwards:  “Nearly every group mentioned something they learned from your film…we are excited to have been a part of the process…thank you for sharing it with us!”  Thank you, Stacey Wickware, Sarah Melvin, Lisa Kingsbury, Kris Bucu and all of your fabulous students at Dozier-Libbey! I’m glad Fixed passed the senior class with flying colors. Your feedback will certainly make Fixed a better film!

Warmly,
Regan Brashear

P.S. If you would like to help us develop teaching materials to prepare teachers to teach Fixed in their classes from grade 8 through graduate school and/or community organizations to hold community forums based on the film,  please make a tax-deductible donation to the Fixed education and engagement campaign today.

P.P.S. If you are a teacher (grade 8 and up) and would like to schedule a screening of Fixed with your class or at your university, please contact me for details.

“Watching ‘Fixed’ with my students revealed not only my gaps in understanding about the Disability Movement but showed me what my students have learned so far and how much further we need to go… I hope all schools are able to show their students this great film – and discuss with their students all the issues that arise from the viewing. It was a powerful and moving experience!”
- Lisa Kingsbury, English teacher, Dozier-Libbey Medical High School

Reactions from seniors at Dozier-Libbey Medical High School after screening a rough cut of Fixed (11/29/12 & 11/30/12):

“I thought the film was very good and informative. I was able to make a lot of connections.”

“The documentary was very interesting and keeps you thinking what could happen in the future with technology.”

“I really liked this film because it challenged my way of thinking of a disabled person.”

“I would recommend this film to a classmate because it’s very interesting, informative and funny.”

“It was very interesting and it helped me to realize a lot – how everyone is equal and it doesn’t matter if you’re missing an arm or leg, we are all still human.”

“I thought it was a brilliant film and very well thought out.”

“I thought it was a great film!”

“It was awesome!”

“I thought that this film was very well put together and also had a lot of great information.”

“Great film work!”

“I really enjoyed the film and I think it would help change the perspectives of persons who look at the disabled poorly.”

“It was very interesting and opened my mind a little more and encouraged different point of views.”

“Gregor is awesome. Hugh is cool too!”

“This was great and very cool.”

“You did a great job!”

“I really enjoyed the entire movie because it did get me thinking about my future. I hope your pitch to PBS is successful. I think it’d definitely make a great tool in any ethics or medical ethics class. It definitely got me thinking about what choice I’d make if I were pregnant and put in that situation.”

“I enjoyed this film a lot. I think you explained both sides very well. The personal stories from people were great. It also flowed from each topic nicely.”

“Great movie.”

“I love the ending! And I appreciate the film bringing up questions and not forcing beliefs.”

“Good film!”

“I thought it was great!”

“AMAZING film!”

“I really liked how the movie was edited.”

“I believe you did a great job with this film and I hope your movie makes it to PBS! Hopefully I will see the final product on TV one day!”

“Fascinating, humane, and provocative reframing of conceptions of “normal” bodies and “disability.” – Gina Maranto, Director of Ecosystem and Science Policy, University of Miami

Thanks to your support and encouragement we are very close to having a final edit of Fixed! We would not have gotten this far without you. Thank you for believing in this project.

As a first-time director of a project this size, I have been learning lots of lessons and, frankly, making lots of mistakes along the way.  The biggest lesson learned so far is that you can’t always predict the twists and turns a film will take or how long it will take to complete!  I want to apologize for my earlier overly optimistic predictions that we would have the film “in the can” and in your hands much earlier than this.

One of the most exciting results of the Kickstarter campaign has been getting to know a number of new people around the country doing related research in the fields of disability and/or technology. We met with and interviewed many of these individuals, such as Hugh Herr at the MIT Media Lab and Silvia Yee with DREDF, over the last year and, as a result, have effectively doubled the film both in scope and length. We were originally thinking we had a thirty minute film and now are looking at a TV hour (although the exact length may change in the final stages of editing!).

We are determined to finish the editing this winter. Once we hit picture lock, there will be a few more steps which may take another few months: color correction, sound mixing, captioning, finishing the special features for the DVD, DVD authoring and duplication, etc. I will send out an update when we have the DVD and remaining rewards in hand and know exactly when we will be sending it your way. We will also be asking for any changes to your mailing addresses then as well.

Please rest assured, we will not stop until we complete the film, finish the curriculum and send you all the rewards you have signed up for! I cannot thank you enough for your patience and support. If you have any questions, please don’t hesitate to reach me at info@fixedthemovie.com.

In the meanwhile, I’d like to share a few highlights from 2012…

Interviewing Bionics Engineer Hugh Herr
In February, we returned to the MIT Media Lab to interview Hugh Herr, director of the MIT Biomechatronics Lab, rock climber, and engineer. Herr, who uses the bionic legs which he designs being a bi-lateral amputee himself, has a unique perspective on disability and technology, believing it’s only a matter of time before the latter eliminates the former. Considered a child prodigy at rock climbing, Herr lost his biological legs in a snowstorm on a climbing expedition at age seventeen and soon after began using prosthetic climbing legs.

©Hugh Herr

Excerpt from our interview, “Twelve months after my amputations I climbed at a more advanced level with artificial limbs than I achieved with normal biological limbs before the accident. To get to that point I had to think differently about my own body and how my body is viewed in society.  I no longer viewed my body in the way society was viewing my body, as being broken, as being disabled, as being crippled. I started to view not my biological body in that way, but the artificial part of my body. That it was crippled and disabled. That was uplifting and very compelling because the technology is not invariant in time. It can be changed. It can be altered through innovation so my disability, from that perspective, was temporary.”

Side note: Herr was also a key expert at the Court of Arbitration for Sport (CAS) defending Oscar Pistorius’ right to compete in the Olympics wearing the Cheetah carbon fiber prosthetic legs. Pistorius, who we’ve discussed previously, the South African runner known as the “Blade Runner,” made history this summer, being the first double amputee to compete in the Olympics!

Fixed in the News
In March, Al Jazeera’s program, The Stream, produced a show on transhumanism and included an excerpt from the Fixed trailer to highlight their central question: How far should science go in helping humans exceed their biological limitations? Watch the whole show here. The excerpt from Fixed starts at 7:44 mins.

Full Time Focus on Fixed!
This fall, I came to the difficult decision to leave my position as a Producer and Community Engagement Coordinator at Open Eye Pictures, starting on November 1^st, to be able to fully devote myself to the final stages of editing and creating curriculum for Fixed. While I’m sad to leave the great team at Open Eye Pictures, I’m excited to have all of my time and attention on seeing Fixed through!

Upcoming Work-in-Progress Screenings
So after just a few weeks of full-time work on Fixed, it feels like the momentum is building again to carry us through this last stretch. I will be screening the current cut at the Dozier-Libbey Medical High School in Antioch, CA, on Nov 29 and 30^th to the entire senior class as part of their medical ethics class, thanks to funding from the Rotary Club and the tireless efforts of their teacher of the year, Stacey Wickware.  (If you are interested in organizing a screening for your school or organization, please contact me for more information.) Stacey and I are both excited to explore curriculum ideas for Fixed for this age group. I’ll report back about how it goes, and about other upcoming screenings in another post very soon.

A Film Takes Time…and Money
Since the film has doubled in size since the Kickstarter campaign, so has the cost of finishing. We are trying to raise another 13K to cover our final post-production expenses and to go towards curriculum development, marketing and distribution. I know you all have given so much already – and I know that you are the folks who are most interested in making sure this project gets in people’s hands as soon as possible. We could use your financial support to help cover these final steps.

Please consider making a tax-deductible donation through our fiscal sponsor, the International Documentary Association. You can also now purchase FIXED T-shirts and posters, and pre-order DVDs, from the Fixed website. All funding, whether through donations or DVD or T-shirt sales, will go into covering these last stages. Please spread the word!

And thank you, thank you, thank you (!) for your continued support, your patience and for believing in this project in the first place. As always, if you have any questions or comments, please shoot me an email at info@fixedthemovie.com.

In gratitude,
Regan

PS – If you haven’t already, please join our growing Facebook community. We are also on Twitter  and Pinterest. And be sure to check out our latest trailer which includes a few new voices, including Hugh Herr and Fernanda Castelo!

Regan Brashear (Producer/Director), Fernanda Castelo (Ekso Test Pilot) and Jamie LeJeune (Cinematographer) after a day on the water with the Bay Area Association of Disabled Sailors

It has certainly been an exciting fall for the world and for Fixed. After the exhilarating success of our Kickstarter campaign, we set to work on the next stages of the film.  We interviewed Milton Reynolds of Facing History and Ourselves, about the history of the U.S. eugenic movement, and Sujatha Jesudason with Generations Ahead about prenatal screening technologies, sex selection and disability deselection, and filmed performance artist, writer and English and Disability Studies scholar Dominika Bednarska about how ableism is reproduced in society.  We also filmed a classroom debating the social value of prenatal screening technologies at the Lick-Wilmerding High School in San Francisco; at the Abilities Expo in San Jose; and most recently with Fernanda Castelo, a test pilot for Ekso Bionics‘ exoskeleton. Fernanda even got us out on the water a few weeks ago to film with the Bay Area Association for Disabled Sailors (BAADS). Quite a blast!

   

Crew news: Two terrific new production assistants came on board for the fall. Karla Claudio Betancourt and Jackie Grieff have contributed their skills and enthusiasm to the project in a variety of ways from assisting with the last production shoots, designing the new Fixed t-shirt, poster, and button, to transcribing hours of new footage. Many thanks to you both for your hard work!

I also want to welcome back editor-extraordinaire Josh Peterson who edited the Fixed trailer last year and will now be helping me bring the rough cut and all of this great new footage together to craft the final film. Josh has been cutting documentaries for almost twenty years. He was nominated for a national Emmy for Outstanding Achievement in Editing in 2009 for his work on Soldiers of Conscience. He also edited The Rape of Europa, which was nominated for an Emmy for Best Historical Programming and short-listed for a Best Documentary Academy Award. I’m very honored to work with Josh again. Be sure to check out his latest film, Blood Makes the Green Grass Grow, just released this fall.

Next steps: Fixed will be released this spring. We are wrapping up the last round of filming and will begin editing on January 23rd and then the final steps of post-production. In the meanwhile, please feel free to contact us with any questions or comments. Follow Fixed news by joining our Facebook page and our e-newsletter.

A few Fixed fans after receiving their Kickstarter rewards in the mail

A note to our Kickstarter supporters Posters and t-shirts were sent out last week. Please let us know if you still need to provide us with your mailing address.  Digital downloads will be sent electronically after the film is completed. DVDs and the “Professor Xavier Neural Enhancement” package (coffee, mug & DVD) will be sent approximately 1-2 months after the film is finished as we complete the special features. The teaching curriculum and companion DVD will take a few more months to complete after this. Thanks for your patience and for supporting Fixed! We couldn’t make this film without YOU!

If you missed the Kickstarter campaign, we could certainly still use your support with the final stages of post-production.  Please consider making a tax-deductible donation. You can also order your own Fixed t-shirts, posters, and buttons, or pre-order DVDs here too!

Wishing you all the best. We look forward to sharing Fixed with you in 2012!

Warmly,

Regan Brashear, Producer/Director

Filming a prenatal screening debate at Lick-Wilmerding High School, San Francisco, Oct 2011

Jamie LeJeune, cinematographer & Making Change Media collective partner

]]> http://fixedthemovie.com/happy-new-year/feed/ 0 http://fixedthemovie.com/time-to-celebrate/ http://fixedthemovie.com/time-to-celebrate/#comments Sun, 28 Aug 2011 23:38:27 +0000 regan http://fixedthemovie.com/?p=424 Continue reading →]]> At 1:12pm on Friday, August 26th, our 310th backer, Peter Brieger, brought us past the $25K mark! WE DID IT!

Our deepest, most heartfelt thanks to every one of you. We are overwhelmed by the tremendous outpouring of support. When we started this campaign, we didn’t know if we would make it. We believed in the importance of this film but weren’t sure enough other people would agree with us. Yet 300+ people came together to say, yes, we need more conversation about the ethical, social and philosophical issues surrounding human enhancement technologies, differing perceptions of disability, and what it means to be human.

Just yesterday the BBC and NPR ran stories about Oscar Pistorius and his journey to athletic stardom—but not without a swirl of controversy. Does the double amputee have an advantage or doesn’t he? What do we really mean by disability? Is his story following the old “super crip” narrative, or is he part of a movement that’s redefining what’s “normal”?

These are the kinds of questions Fixed addresses, and while our goal of $25k will go a long way toward finishing the film, there’s still 4 days to make more magic happen.

What other wizardry is there? In our push to expand the conversation, we want to develop curriculum to reach students at the high school and college levels, as well as in medical schools and bioethics programs. The added dollars will allow us to devote more resources towards that goal.

If you haven’t yet contributed, donations can be made right up to the cutoff time of 9 a.m. on Wednesday, August 31. And, please, let’s make the most of these last few days by continuing to spread the word!

Thank you again. We are ecstatic!

With love and gratitude,

Regan & Team FIXED

PS: Here’s a message from core team members: Regan Brashear, Cielo Lutino, Dave Graham-Squire & Jessica Fuh

Today marks a huge milestone: we hit 10K on Kickstarter! In fact, as of writing this, 111 backers have collectively raised $10,380! We are 41% of the way there, folks. Do you know just how much you all ROCK my world?!

I cannot thank you enough, but, instead, I will try to do my best to keep you better informed about Fixed as we move forward.

To this end, Fixed has entered the Tweeting world today and has a brand spankin’ new Twitter account: www.twitter.com/FixedDoc

If you are on Twitter (and it seems I am one of the few who hasn’t been in the Twittersphere much thus far so you are probably there), please follow me and I’ll follow you, too. Okay, see, that just sounds creepy. But you know what I mean. I want to follow what you’re thinking about, what cool links you discover, what you’re up to, etc… So please, tweet tweet!

155 of you have already discovered the FIXED Facebook page @ http://www.facebook.com/FIXED.the.movie  Good on you! Now where are the rest of you? Please come visit, join the page by clicking “like”, comment on the stories you’ll find there and post away about your own work, thoughts or related discoveries. I mean, seriously, every day there are more and more stories in the news about new technologies and new artistic movements challenging how we think about disability and the body, sometimes in oppositional and deliciously complicated ways.

How about this for an incentive? I will send a free Fixed poster to the next 30 people who become both a FixedDoc Twitter pal *and* who “like” the  FIXED Facebook page. (Full disclosure: posters won’t be ready for mailing until October, but they will be very cool!)

Okay, and now a promise. Well, first, some background…so this Kickstarter campaign has been one seriously exciting, nail-biting, nerve-wracking and wonderful adventure from day one. I have been so honored, and humbled, to meet so many new friends and fellow travelers through doing this campaign these last few weeks – and to have so many of my friends and family members dive in to help this campaign succeed (I want to devote another update just to singing their praises!).

As my friends on Facebook will tell you, I have not held back at sharing the excitement of this journey with everyone on Facebook, often… Yes, I’m afraid this Kickstarter campaign has made me one of those annoying posters who can’t stop talking about their project on Facebook (um, and everywhere else, for that matter), posting hourly updates on what percentage we’ve reached, how many backers we have, etc., because it is seriously exciting to see your dream get one step closer every day. And seriously touching to see so many people come out of the woodwork to help make it happen. So I shared one day on Facebook that with every email of support or pledge to the project, I was moved to shed a happy tear or do a little happy dance, and sometimes both… and a friend dared me to film it and post it. Then other friends started demanding to see the happy dance. So here’s the promise: I’ll spare you the happy tears, but when we hit 20K (5K short of our final goal) I promise to film and post my happy dance, so hopefully you will share in the excitement with me. And heck, maybe post your own happy dances too! And hopefully that last 5K will just come boogying in the door to join the party.

As always, please feel free to reach me at info@fixedthemovie.com. And please tweet and Facebook and dance about Fixed to your whole community! We have another 15K to raise before this party is over!

With a heartfelt thanks,

Regan

At 9am, Monday, July 25th, we launched the FINISH FIXED KICKSTARTER campaign with a goal to raise the $25K that’s needed to finish the film in 37 days! Kickstarter is an all-or-nothing platform. If we don’t reach our goal or surpass it by August 30th, then we won’t receive any of the money pledged.

It is now 5 days into the campaign and thanks to the generous donations of our first 38 backers, we have raised $4,486! That’s 17% of the way to our goal. We have 32 days left to raise the remaining 83%. We know we can reach this goal but not without your help.

If all of you wonderful FIXED fans out there made a donation today and then ask 10 of your friends or colleagues to match your contribution, we would reach our goal and FIXED would be on its way to the finish line in no time. No donation is too small. Every dollar counts!

So be sure to check out the Kickstarter page today by clicking on the icon above. You can learn more about the campaign, see a short video clip with the director, and check out all the great rewards you will receive for making a donation! Please spread the word!

http://kck.st/fixedthemovie

Here’s a link to a video from last year’s conference and more information:

Tarrytown Meeting 2010

“From July 27-29, CGS hosted the inaugural Tarrytown Meeting, the first of three planned annual events. More than 100 invited advocates, scholars and others gathered over three days to consider what can be done to ensure that human biotechnologies support rather than undermine social justice, human rights, ecological integrity and the common good. The Tarrytown Meetings, and the network of individuals and organizations participating in them, grew out of a series of strategy consultations with colleagues and allies. ”

In other news, we will be kicking off our Kickstarter campaign later this week! Stay tuned for more updates!

A three-judge federal appeals court heard arguments on Monday in a case that could decide the future of human gene patents. The high-profile lawsuit was filed by the American Civil Liberties Union and the Public Patent Foundation on behalf of a number of researchers, patients, women’s health organizations and scientific organizations against Myriad Genetics and the University of Utah Research Foundation, holders of patents on genes known as BRCA1 and BRCA2 that are associated with elevated risk of breast cancer. The plaintiffs argue that the US Patent and Trade Office erred in granting these patents because genes are products of nature, not human inventions.

The panel heard Myriad’s appeal of a decision strongly favoring the plaintiffs that was issued in March 2010 by Federal District Court Judge Robert Sweet. Whatever is decided by the appeals court, many observers expect the case to continue on to the Supreme Court.

A few things stood out in Monday’s hearing. First, the judges were very interested in whether all the plaintiffs actually have standing in the case – that is, in whether they have actually been harmed by Myriad’s control of the genes. For example, University of Pennsylvania researchers whom Myriad stopped from conducting BRCA1/2 testing are now saying that if the patents on those genes are ruled invalid, they are unsure whether they will continue to screen for them. The judges focused on this account to the exclusion of statements filed by more than 150 other labs attesting to work that had been halted by the Myriad patents or by “cease and desist” letters from the company. The ACLU argued that University of Pennsylvania will, of course, screen for those two genes since their molecular pathologists screen for almost every other medically relevant gene on a daily basis. They asserted that these researchers’ reluctance to say so outright is due to past threats by Myriad.

If the appeals court judges wish to sidestep this high-profile and high-stakes case, they might use the question of standing to avoid making a decision. But that kind of dodge would likely make it seem that the Justices were unsympathetic to persons with breast cancer and other diseases that are correlated to particular genes. This could help get more Members of Congress interested in fixing the gene patenting problem—something they have left up to the courts until now.

A second notable aspect of Monday’s hearing was the extent to which the U.S. Solicitor General supported the plaintiffs’ key argument that genes are not patentable. This was in keeping with the Department of Justice’s surprise move last fall when it filed a “friend of the court” brief in support of the lawsuit against Myriad. Unfortunately, the DOJ and the Solicitor General are saying that while genes cannot be patented, copies derived from them, known as cDNA (copy DNA), can be. While creating cDNA is technically complex, for explanatory purposes, this is equivalent to saying that while one cannot patent a Picasso painting itself, patenting and selling a photocopy of the original is completely permissible. While we disagree with the DOJ’s conclusion on cDNA, it was a big plus to have them arguing largely on the side of plaintiffs in the appeals court hearing. A major aspect of the DoJ’s motivation in this case is to assure that patents on isolated genes do not prevent medical gene testing, including whole genome sequencing for multiple diseases, from proceeding.

Perhaps the most striking moment of the day, however, came when Myriad’s lawyer unaccountably admitted that under the company’s legal theory, elements of the periodic table are in fact eligible for patents. Pressing the logic of this claim, the Solicitor General pointed out that lithium, a naturally occurring element that does not exist in isolated form in nature, was first isolated by a chemist in 1818, but that no one has ever claimed it is patentable. In response to questioning by the judges, Myriad’s lawyer said pretty much outright that yes, he does believe that isolated lithium is patentable material. In his defense, he did note that he was an English major, not a scientist.

Barely addressed in the hearing was the important issue of DNA as carrier of information, despite the fact that Judge Sweet relied heavily on this idea in his reasoning about why DNA is different from other material compositions. In his ruling for the District Court, Sweet wrote:

The information encoded in DNA is not information about its own molecular structure incidental to its biological function, as is the case with adrenaline or other chemicals found in the body…this informational quality (of DNA) is unique among the chemical compounds found in our bodies, and it would be erroneous to view DNA as ‘no different’ than other chemicals previously the subject of patents….DNA, in particular the ordering of its nucleotides, therefore serves as the physical embodiment of laws of nature – those that define the construction of the human body…the preservation of this defining characteristic of DNA in its native and isolated forms mandates the conclusion that the challenged composition claims are to unpatentable products of nature.

Hopefully, the appeals court will consider this crucial piece of the puzzle when making its decision, since failing to do so will favor Myriad over the plantiffs. But expectations are not high, since this appeals court has in the past routinely upheld the views of patent holders. How broadly it rules and what deference it gives to the Justice Department’s views will affect how and whether the case is accepted for a hearing at the Supreme Court.

Regardless of the outcomes in this case, it is likely that a true fix to the problem will only come if Congress steps in and declares naturally occurring DNA sequences as outside the scope of patentability. A similar statement was made by one of the judges on the panel for very different reasons, when he said that a ruling in the Myriad case could have “dramatic” consequences for the biotechnology industry and that the issue may be more appropriately addressed by Congress. It is time for Congress to reintroduce and pass the currently stalled “Genomic Research and Accessibility Act,” which would ban the patenting of genes and naturally occurring DNA sequences.

Eric Hoffman is Biotechnology Policy Campaigner at Friends of the Earth. Jaydee Hanson is Policy Director for Human Genetics at the International Center for Technology Assessment.