My hope for this post/video is that you, the members of the PPMD community, will view my presentation above, consider the argument it makes, and participate in a dialogue about how video (including, but not limited to Darius Goes West) can be more efficiently used to recruit/enroll a larger and more diverse set of people in the fight against DMD.
Now that I've stated the purpose, let me provide a little context....
...First, if you are unfamiliar with TED, TEDTalks (online), or the TED conference(s), please check it out at TED.com. It rules. It will be one of your favorite websites/concepts ever. Swear.
While at the main TED conference as 2009 TED Fellows, Darius & I had the honor of giving a presentation from the coveted TED mainstage. Darius almost freaked out when he rolled out and saw Bill Gates, the founders of Google & Will.I.am (Black Eyed Peas) staring up at us from the front row. I had already vomited back stage, so I was good.
The 2009 presentation at TED went over extremely well. In fact, we got a standing ovation (Bill included!). Unfortunately that talk is only available on the TED DVD, and not yet streamed on TED.com. We're working it...
As a result of that talk, however, I was recently contacted by TEDxAtlanta to give a longer presentation. They asked me to talk about our team's experience in turning, as they originally put it, a "movie into a movement," and how video can be used as a scalable collaborative problem solving tool. FYI: TEDxATL is one of many TED licensed events going on across the country.
I offer this talk to the PPMD community so pointedly because...and please don't take this the wrong way...I don't think we, as a group of individuals who want nothing more than to affect a treatment or cure for DMD, are using the power of video to its fullest potential. Don't get me wrong. There are a ton of AWESOME videos out there. What I aim to constructively criticize is the capacity in which we, as a community, are using these videos to bring more people to the fight.
I realize it is totally terrible and half-baked of me to make a point and not justify it, but I don't want to make a long post longer. Consider it a conversation starter. I plan on trying to justify what I mean in the public discussion that I hope ensues. I also plan on listening intently and learning a ton from this conversation.
If you agree, please post.
If you disagree, please post.
I encourage you to share this strand/video so that all angles are represented!
And above all, keep up the fight! Working alongside such incredible people on a common goal has been the deepest honor for all of us at DGW.
That's quite an honor to be asked to speak at a TED events. Congratulations, and thanks for all your efforts on behalf of our boys.
I think some films have been quite effective at building movements - or at least adding fuel to the fire. In my opinion, the most successful in your list have been An Inconvenient Truth and Food Inc.
I don't see video being used in really any kind of effective way either at this point, other than DGW. What do you have in mind? I think it's got to be something different than a feature length film - that's been done.
Can't say BIG THANKS enough for everything you and Darius are doing to kill duchenne. As a duchenne parent - no words are strong enough to express the gratitude we feel in our hearts for your hard work. TedxAtlanta is yet another example of your creative ability to reach people (Bill Gates none the less!). I'm extremely happy to see your post here at PPMD and feel there is no controversy in the world of DMD too large to go unexamined. This is a safe format to obtain opinions, survey ideas and gain support for taking the movement further. There is nothing terrible or half baked about what you've said and done.
That said, we duchenne fighters still need to unify & solidify our efforts together to incorporate in reality what we know needs doing...melting into ONE VOICE. A video voice will do nicely. Perhaps you would consider taking Darius's story to include other duchenne guys? A "Darius Goes Wide", perhaps a worldwide (?), sequel to show the average duchenne family living and LOVING life.
Not sure if this is a good idea but thought I'd throw it out there & see what sticks.
Cheryl - I love the worldwide idea. There is definitely a need for collaboration among groups not only within the U.S., but throughout the world. And there are many, many amazing families and stories to be shared.
Video could certainly be used to catalyze this movement. Indeed, it is one of the most effective ways to share a message or idea. A new video to raise awareness would be great, but meanwhile, I hope that groups will take advantage of DGW more. As we all know, it has proven to be an incredibly effective film.
There is no room for politics in this effort. This is a race we are sharing in, not competing in. I truly believe that progress is being slowed by our lack of collaboration, and that is time we cannot afford.
Very sorry for the slow response. Internet issues at my new place.
@Keith, I think you are definitely right in that it doesn't need to be a feature length film, but that isn't to say that it definitely shouldn't be. I guess the story kind of dictates the length. To answer "what am I getting at," I guess I'm saying that if we agree about the power of video, then how do we 1) identify the best of what we have 2) optimally disseminate the best to the DMD community 3) facilitate the sharing of the stories beyond the DMD community 4) build a structure that capitalizes (in terms of money, awareness & ideas) on the exposure achieved by the first three & 5)facilitate the creation of more high quality video. Like you say, I don't really see that happening right now.
@Cheryl Thank you! I also love the worldwide idea. I would certainly encourage anyone touched by DMD to invest in a camera! My question is how can we help people make videos that are unignorable. A best practice document, maybe? A video editing seminar as part of the DMD conference? And my main point, is how do we make videos about DMD that appeal beyond the warm DMD audience? Know what I mean?
@Sarah Thank you for your awesome comments. I also really appreciate you all recognizing DGW as an effective film. We think of it as our job/niche to dip into the mainstream (via pimp my ride originally, and all exposure since) and get fresh faces, brains & hands in solving this problem. We operate on the idea that this problem CAN'T be solved without legions (not pockets) of support. We've succeeded in a lot of ways---every screening enrolls new people to the fight--but honestly in a lot of ways I feel like we've only penetrated a minuscule amount of the mainstream.
If I may be frank, while we attribute almost all of the success of DGW to the grassroots organizing capability of our supporters, we also can't help but wonder why there hasn't been more grassroots organizing. Does that make sense? I can only imagine that the void has to do with one of two things. 1) Our failure to create systems that make it easy to participate OR 2) said "politics"
While I appreciate diversity and recognize that it serves it's purpose in terms of minimizing risk, I couldn't agree more with the @everyone's sentiment to join forces and unite when & where we can. To move this conversation along I would ask three questions. Don't feel pressured to address all three, but please do try one.
1. How can we create the systems that I mention in the @Keith reply above and facilitate the identifying/curating of more/better videos (and optimize those that we have)?
2. How can DGW make it easier for members of this community, or any community, easier to participate (tools? funding alignment? optional edits?)
3. How can we begin recognizing when the politics serve a purpose & when they are detracting from the overall cause?
Thank you so much for responding, and I hope more people will join the convo!
Logan - I'd make the case that the story is the hard part.
As you say, there is certainly no shortage of stories out there. Finding ones that have any kind of commercial appeal is a lot harder. I think there's a time and place for tearjerker videos - and we all have those stories. But, I don't think those make money or bring a large audience. DGW had appeal because it was about the bond of friendship and Darius having an experience of his lifetime. Finding another like that is no easy task. Inspirational stories have appeal.
So - how do you find the inspirational stories?
Certainly a call for nominations to parents and patients from the advocacy organizations would be a great first step. I'd be interested to hear whether they would put out a call for something like this without being "cut in" on the proceeds. Would also be interesting to hear whether any of them would put up funding for it, based on the success of DGW.
Facebook is also an excellent tool to reach the DMD community outside of the advocacy organizations. There's hundreds of MD families using Facebook. At least.
I wouldn't limit the stories to DMD patients doing inspirational or extraordinary things. I'd include stories about those that started non-profits, those doing fundraisers, volunteering for camps, advocating in DC, fighting for their boys' rights in school, etc etc.
There's lots of good things going on in this community. I'd suggest that any further effort with video needs to focus on the positive.
So I guess when I was thinking of Darius goes Wide - I was heading toward the concept of you/Darius getting out there worldwide to meet & greet others with DMD & provide a very short clip, respectively, showing something about them, then perhaps using some of that to make a longer movie...something to that affect. Reason is: you already have a following; you already know what you're doing re making videos & sending the message; you already do it extremely well! Why reinvent the wheel?
Q1-I think we've already ID'd the best of what we have for making film-YOU (sorry Logan but you have gone from nowhere to being quite good at this). What about taking X-mas orders for DGW, send them to DMD parents to tuck in aunt Lucy's gift box? I'd be happy to send out 6-10 for starters. Q2-make it easier to participate by continuing to make it fun (if at all possible to make more fun after wasabi). Goslabi was great but did attract a certain age specific group in my (ok admitting age here) opinion. This wasn't bad by any stretch - was fun for my son to watch. Q3-Not sure if you were referring to USA politics or the standard "office politics" that go along with everything in life? Please direct.
One reason you might not be seeing more involvement from parents is we are swamped, broke & heartbroken with daily struggles. Often our extended families don't participate because they can't stand to look or walk in our "wheels". You are an amazing friend to Darius, wish my son had a Logan of his own :) Another reason families don't participate more is fear of exposing their son the worst about dmd- before they should know.
And, not sure about how to connect the dots... but thinking outloud here... when my husband climbed Mt Shasta a couple mos ago for CureDuchenne (my other fav organization), he was honored to have a couple of pro cameramen along. These guys were WONDERFUL! Even helped us received support/attention from "The Real Mike Rowe" from Dirty Jobs. So, what can we do about these dots?
Never before has one movie changed my life so many times. Never before have I seen one movie drive so many people to change. Never before have I had a life changing tool to spread awareness of my disease. Darius Goes West was able to do that...and so much more...in just a two hour long movie.
My idea is basic, but it just seems like the right thing to do. Politics has always been able to reach the masses with governors, Senators, Representatives, mayors, and so much more. I am not trying to say turn DGW into a political venture. I am just trying to say that we should follow their model. A disconnected group of supporters cannot make a movement grow. If I may be frank, DGW, in my opinion, is just that, a disconnected group of supporters. That cannot be said about all of the supporters, but most of you can hopefully agree with me. Sure, thousands of people have seen the movie, but how many of them have tried to add to the movement?
So, my idea is to have a DGW Representative for each state and call them Goslabi Representatives. Logan, I know you and the rest of the crew cannot possibly handle an entire country of supporters alone. Creating these representatives will allow you to concentrate on future movie ventures and expand DGW beyond what it is now. You were the initiator of the movement, but that does not mean you have to be the messenger too. That is what your supporters are there for, to support you and your efforts.
The role of a Goslabi Representative would be to spread DGW through their state and to be in charge of the supporters in that state (exactly like I have been doing with a showing this month at my school and 3 more showings around springtime at large universities in my state). Their job would also include being the liaison between their state and DGW itself (that's you guys). Universities and high schools cannot possibly say no to showing the movie, so the Goslabi Representative would have hardly any trouble putting together showings.
I know that DGW has already been around the nation to a ton of universities and high schools, but the students change every single year, especially at college. Those are the people we want to show DGW to, so that we can change their lives early on. Even if they just pass it on to one of their friends, there is still a chain reaction of people that will follow. When these children have children themselves, they will pass it on to them too…and that cycle continues. One person touches hundreds of lives every day, whether they know it or not, and if my math is right then 100’s of lives touched per day x 365 days x a few years x 1000’s of supporters is a really large amount of change.
With all that said, I would be honored to be the Goslabi Representative for New Jersey and I know there are a lot of supporters who would also be honored to represent their state for DGW. I do not see anything that can go wrong with this idea, but if you do let me know.
That's what I'm talking about, Anthony! I love your energy. You always bring the action full throttle! I also love the idea of representatives. And so, I ask you as the representative of NJ, how we might identify and empower representatives in other states? And you are so right to point out the annual, or even bi-annual, replenishing of student energy each year. The goal of our Schools program--where we provide free DVDs to educators--is to tap stimulate the re-showing of DGW. The Skyping part of it is the source of donations.
@Cheryl -- wonderful ideas!
re traveling doc: I'm not sure if you know, but Darius can no longer travel regularly. He has congestive heart failure, and even though we caught it early (and he is doing very well), he still needs to pull back from the hundreds of thousands of miles that he put in last year. Also, the travel & production part can be expensive. We've had the benefit of individual supporters footing the travel costs for all of these years, but it isn't very sustainable (even though it has raised FAR more money than it has cost, to date.) We're still very focused on the original DGW reach more people, but I will certainly look for opportunities to incorporate something like this in our travels. Maybe Skype interviews with images could work?
re: Christmas gifts. We LOVE this idea. We've always tried to do something for Christmas, but it has never taken hold like we hoped. I'm wondering what you think about this idea: We could provide DVDs free to registered PPMD parents (the same way we do educators) and they could send them to folks as gifts. We couldn't cover shipping, but we could certainly provide the DVD part of the transaction for free. Do you think something like this would motivate folks (see next thought)
re: parent involvement. I hear you on the being swamped with regular life and the heaviness of DMD. I also certainly understand the sensitivity with which this information must be shared. I'm not a parent, or even a blood sibling/relative, so it is hard for me to fully understand the familial dynamics, but I can tell you that I've heard this sentiment echoed from many a DMD parent that we've met on the road. That said, the most amazing thing about Darius, in my opinion, is his ability to communicate all of the complexities of DMD without getting bogged down in the tragedy of it..but also without sugar coating it. Almost every parent who has hosted a screening has reported pre-screening hesitation for the reasons you list, but post-screening jubilation for the exact same reasons. What I mean is that the DVD has repeatedly served to communicate the intensity of the issue to family members, communities & friends without the actual parent having to bear he burden of communicating it. Does that make sense? We've had grandparents, uncles and even one half of parental units be in utter denial about the realities of the situation (and understandably so). Previous to a screening, sometimes for years, they are paralyzed with grief, or just ignore the problem. But, after a viewing (in some cases they are dragged to it), and after laughing & crying (goslabi scene included!), they become the BIGGEST and most active supporters. I've been forwarded apology letters---sent from one family member to another who is directly effected by DMD---that would simultaneously break your heart and fill it with all the hope in the world. I'm sure you know what I mean.