BENEFITING: PARKINSON'S ASSOCIATION OF SAN DIEGO, INC.
EVENT DATE: Oct 09, 2013
A film following a team of Parkinson's patients to Mt. Everest as they raise funds and awareness for a non-embryonic stem cell project.
All donations from this fundraiser support production of the documentary.
The Documentary Film
As a lifelong filmmaker, it is my belief that the core of every film, regardless of genre, should be about ordinary people doing extraordinary things. This documentary is just that: a group of Parkinson's Disease patients and their caregivers are trekking to Mt. Everest Base Camp as they raise funds and awareness for a privately funded non-embryonic stem cell pilot project, that might, just maybe, reduce or eliminate the symptoms of this debilitating disease.
This film will take an objective look at funding for medical research in the United States. Much of current funding is by the pharmaceutical industry, but is driven solely by profit. In this case, where new, cutting edge patient-specific therapies don't have a mass-market appeal, traditional funding sources don't exist. So the patients themselves stepped up.
In 2010 an opportunity opened at The Scripps Research Institute in San Diego for a non-embryonic stem cell pilot project for Parkinson's Disease. The research, developed by the 2012 Nobel Prize winner for medicine, is to take skin cells from the patient, then "turn the clock backward" on those skin cells and change them into induced pluripotent stem cells. These IPS cells can be coaxed into becoming any type of cell in the body, in this case dopamine-producing neurons.
This has already been done for eight Parkinson's patients. Next, these patient-specific dopamine neurons will be transplanted back into the patients' brains, effectively "refilling the bucket" of dopamine neurons that have died. Although there is no known cure for Parkinson's, the expected outcome is that the symptoms of Parkinson's, currently controlled by aggressive drug therapies, can be diminished or even eliminated.
The film will follow the progress of the eight patients and the stem cell research project. At the heart of the film will be the October 2013 trek by several of the patients to Mt. Everest Base Camp. The climb is to raise funds and awareness for the research project. This is the unusual part: the funding for this research is being driven by the patients. Because this particular stem cell therapy is from-the-patient-to-the-patient, traditional and obvious funding options are not available.
So the patients have stepped up in all manner of fundraising: sponsored walks, fundraising parties, and anything else they can do to raise funds and keep the research going. In 2011 a group climbed to the summit of Mt. Kilimanjaro and raised the first $400,000 to start the project. Now they are working on the next $2.5 million to get FDA approval so the neurons can be transplanted into their brains.
The eight patients are amazing...articulate, heartfelt, and committed to doing something that will not only help their own plight of a debilitating disease with drastic symptoms and no known cure, but essentially they are donating their brains to become test subjects for a project that, to this day, has only shown success in laboratory animals. This will be the first time this type of neuron will be reintroduced to a patient.
One of the eight describes herself as "an astronaut...one of the early astronauts," and that the project has "provided a purpose for [her] life."
Another describes how important it is to be "involved in a project that tried to do something for mankind."
And yet another speaks of being involved in a project that is "ultimately going to help so many people."
The video that opens this Crowdrise campaign is three-minutes long. If you would like to learn more about these eight patients and hear more from the clinician and researcher, click here to watch the 10-minute version:
This research has been compared to the Salk discovery of a vaccine for Polio. It has also been compared to how experimental and risky chemo therapy and radiation were 25 years ago. But those both had mass-market appeal as drug therapies, leading to a seemingly endless supply of research money to develop pharmaceutical treatments.
Non-embryonic stem cell therapies are new, are in this case patient-specific, and are currently completely experimental. So these eight patients raised their hands and said, "use me."
Margaret Mead said, "Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has." In the scheme of things, this project and its associated research will do just that.
I spent my life as a filmmaker, first shooting and directing commercials, then moving on to dramatic films for theater and television. With several deep personal connections to Parkinson's Disease, I have committed to producing this documentary about the research and the trek to Mt. Everest. This means documenting the current stem cell development, the fundraising opportunities, the prep for the Nepal trip, the training hikes and other events, culminating in October at 17,600' as the team reaches its goal on the biggest, most dramatic mountain on Earth.
The film project requires about $40,000 for production and post production – most of the money will go to travel expenses, equipment rental, and editorial. There is no direct financial return on the film...it will be offered to anyone and everyone who will distribute it, viral it, or show it to a few friends.
I've completed a 10-minute film that defines the research project, introduces the patients, and shows the world what these patients and researchers are working together for. The film can be seen above or at www.summit4stemcell.org. There are also 3-minute and 5-minute versions on the website.
I believe so whole-heartedly in this project that I have begun to invest personally to start the film, purchasing my travel to Nepal and the Mt. Everest trip fee, and purchasing some of the needed equipment (see the section of the challenges of shooting on Mt. Everest). The Crowrise money will help pay for crew travel, equipment, and editorial.
I'm asking the community to help make this film a huge success – a film that will introduce and document some of the earliest research on non-embryonic stem cell therapies. A film that will document some of the "earliest astronauts" in these new forms of healing. A film that contributes to the good of mankind.
Risks and Challenges
Any project made in a third-world country poses its own set of challenges. Adding 17,600' of altitude adds another layer of risk. And I read someplace that it's cold on Mt. Everest.
I am looking at each of these challenges (and many others) carefully and pragmatically. Making a film in a third-world society means taking everything...spare cameras, spare batteries, spare audio equipment, spare everything. I've decided on a camera that records to dual SD cards simultaneously, eliminating the need to run computers to back up the video data.
Electricity may be a huge problem, with the potential for up to five days in a row without electricity to recharge batteries. I'm working on multiple, lightweight, high-capacity battery solutions that can run cameras, tablets, and simple lighting units for multiple days. We'll have power at the beginning and end of the trek.
As an avid cyclist, runner, and gym-rat, I'm ramping up my training regime so I can not only make the trek with a solid level of fitness, I can work in those extreme conditions. We're also doing training hikes to 14,000' prior to leaving.
Finally, working in the cold appeals to me. I have a long history of playing in the winter...racing on cross country skis, climbing vertical ice, and long snowshoe trips in the mountains. That will be the fun part.
Beyond all that, we're taking Parkinson's Disease patients with us. This is a group of strong-willed, dedicated men and women with very serious physical challenges...tremors, balance issues, freezing-of-gait, dyskenesia, and more. The beauty and grace of having an opportunity to record this trip with these amazing souls is a once-in-a-lifetime opportunity, and I look forward to bringing this story to life.