ROVA: walk to a future of health
Organized by: Kim and CB Goodsell
Carly testing ROVA on the dance floor
December 29, 2016
"Let food be thy medicine ...Walking is man’s best medicine" - Hippocrates 400 BC
Facing a future of disability CB and I invented ROVA, a new category of walker technology. We designed ROVA to enable human potential and expand the limits of mobility for all of us who struggle to fully participate in life through movement. ROVA has offset my difficulty walking and restored meaningful mobility to my life.
Our goal: raise the funds for ROVA's future manufacture to make ROVA availible to all those whose lives it could enrich.
Our mission: to perfect the art of aging, restore meaningful mobility to our disabled community and inspire people from all walks of life to walk to a future of healthy aging.
Hello, I’m Kim Goodsell. Formerly a world ranked endurance athlete in 2012 I discovered I had an extremely rare genetic mutation called a laminopathy - a premature aging disorder which predisposes me to sudden cardiac death and a future of progressive heart failure, disability and early death. My success harnessing the power of my genetic information, employing remote medical sensing technologies and invoking anchient medical wisdom to manage a complex and challenging condition has earned me international acclaim as "The Patient of the Future". I am committed to empowering, equipping and enabling others to do the same.
rove |rōv| verb [ no object ]
vigorous, purposeful roaming
Enabled by ROVA to help me walk, I recently crossed my first finish line in 20 years after successfully completing the Carlsbad Half Marathon. Watch it on YouTube. It was the first event in a series of marathon events I'm planning to participate in preparation for ROVA's Walk to a Future of Health fundraising walkathon - a 1500 mile walk/cycle from Starfish Medical (ROVA's future manufacturer) in Victoria, BC to Scripps Medical campus in La Jolla, Ca. My ROVA 2.0 working prototype hand built by CB employing state-of-the-art pro carbon bicycle frame technology is ready to go the distance.
The purpose: To raise awareness of the ROVA project ... to make real the power of whole foods to heal ... invoke walking as a cure ... to demonstrate the power of realtime health data and genetic information to prevent, monitor and manage disease ... and inspire millions to seize their moment in this digital age of opportunity and drive a future of #HealthMadeByUs.
All funds raised through the walkathon will be used to further the ROVA project.
Your donation will ensure that our success doesn't end at the finish line! Every contribution, no matter how small will bring us another step closer to fulfilling our mission.
THE STORY OF WHAT WE ARE DOING:
- CB and I founded ROVA REALTIME, Inc. a young mission-driven benefit company coming of age with the attitude that Good Design is a Human Right.
- ROVA 1.0, our first 3D printed prototype, won the 2014 GOOD DESIGN AWARD - The most prestigious international design award honoring industry leaders that have chartered new directions and pushed the envelope in the world marketplace for products that enrich society and peoples’ lives.
- All 27 of ROVA’s patent claims have been found to be “novel and inventive” by the U.S. Patent Office and we await ROVA’s final patent award.
- We have successfully completed ROVA 2.0 - working prototypes hand built by us using state-of-the-art carbon bicycle frame technology.
With limited personal resources we have taken ROVA this far. With a crazy optimism, an indomitable spirit and the help from people like you who share our commitment to make a positive social impact on the lives of our vulnerable disabled community, we will breakthrough the seemingly impossible barriers to success.
Where your donation will go:
Our target of $80,000 is the minimum needed to continue our bootstrap process of ROVA’s development. The funds raised will be used to:
- cover the high costs of designing and building the ROVA 2.0 working prototypes
- conduct in-context user feedback to validate the design concept
- engage Starfish Product Engineering (Starfish Medical) in Product Requirements Documentation/Risk Assessment and Analysis Draft / Define Bill of Materials (BOM - list of the raw materials, sub-assemblies, intermediate assemblies, sub-components, parts and the quantities of each needed to manufacture an end product) /Prototype Build Plan and Development
THE STORY OF CROWD FUNDING:
Crowdfunding is a product of the digital cultural revolution. It is redefining how we gather and share resources. New crowdfunding platforms are catalyzing a radical disruptive democratization of the market place. They are enabling do-it-yourselfers (DIY) to overcome barriers such as high start-up costs and expensive prototyping, which previously prevented ordinary people with great ideas from bringing disruptive innovations to market. Through crowdfunding we are being empowered as individuals to bravely step up, take the inherent risks of social entrepreneurship and offer our gifts to the broader collective.
Crowdfunding is analogous to barn raising. When a farmer needs to raise a barn, word goes out to neighbors and friends, and the community gathers to participate in the barn raising. They do it for social good, shared interests and for the joy of helping others be successful individuals within the community. Crowdfunding is like that. Future users, friends, family and those with a special interest in seeing a product come to market pitch-in to help out the folks who have the vision to bring about social progress through meeting an unmet need, but who confront impossible odds of success through traditional funding.
We appreciate you sharing your valuable time with us to visit ROVA’s CrowdRising campaign and hope that you will share our commitment to restoring meaningful mobility to our disabled community and support us in bringing ROVA to success.
Follow ROVA’s Walk to a Future of Health walkathon on:
Kim Goodsell / Facebook
@KimGoodsellROVA / twitter
… or better yet join me on my Walk to a Future of Health with ROVA: firstname.lastname@example.org
THE BACK STORY:
breakthrough |’brak, THroo | noun
1. a sudden, dramatic development
20 years ago … the first female finisher in a relay race … I had a “breakthrough event” - a near sudden cardiac death event. It was by all expectations the final finish line I would cross. I was diagnosed with a rare genetic life-threatening cardiac disorder called ARVC. Predisposed to sudden cardiac death and a future of progressive heart failure, I became an early digital patient pioneer when I was implanted with the most powerful remote sensing technology on the market - an Implantable Cardiac Defibrillator. It was a speed bump in the road. I had to slow down to prevent subsequent breakthrough events, but I didn’t decrease my distance.
breakdown |’brak, doun | noun
2. a failure of a system
In the ensuing years, the muscles in my arms and legs began to mysteriously weaken and waste away. I had to decrease my distance, but CB and I found ways to off-set my difficulties and keep moving. In 2010 I hit a solid impermeable wall and experienced a systems crash associated with pervasive and persistent pain and motor neuron dysfunction. I needed a walker to walk and sometimes a wheelchair. I was diagnosed with another rare genetic disease, CMT - a progressive degenerative neuromuscular disease.
No challenge is too great with the right support:
The odds of having both ARVC and CMT were calculated at 4 in 10,000,000 … I had a better chance of being hit with an astroid … and I felt as though I had. Survival is dependent on mobility. I knew I had to keep moving to maintain my health. Staying mobile presented a huge challenge, but no challenge is too great with the right support. Unfortunately the right support was not available.
The future is already here … it’s just not evenly distributed - William Gibson
In a modern world defined by design that enshrines the fusion of art, human centric form and function with high tech materials current walker design is a relic of the dark ages. Employing a 500 year old user interface which promotes poor posture and joint stress, today’s walkers are dangerous in addition to being socially stigmatizing. The industry has disregarded a vulnerable segment of society’s need for meaningful mobility and rendered us irrelevant in the context of the 21st century.
The universal need for meaningful mobility:
Accustomed to high performance sports equipment which delivers functional safety and meaningful experience, CB and I found the current state of walker design to be dehumanizing. We have spent the better part of our 35 years together roving through wilderness engaged in what some may consider extreme endurance activities … perfecting the art of moving. We have a deep experiential understanding of the universal need for meaningful mobility and the essential role it plays in promoting health and well being.
Having a profound empathy for the human aspirations built around mobility, we employed our art to restoring meaningful mobility to our disabled community. We created a new category in walker technology - “WalKArt” through our invention of ROVA ... a walker … a kart … an artful, utilitarian, high tech, sporty, walking companion with an infectious friendly character. We designed ROVA to enable human potential and promote a “ProAbility” mindset.
A long road of breakthroughs
My health odyssey has been credited by Eric Topol, the world renown physician and medical visionary, as "marking a watershed moment in medicine made possible by the proliferation of digital technology and the online democratization of information". I am an e-Patient - a new breed of patients who are empowered, enabled and engaged experts on their conditions. We are creating a future of #HealthMadeByUs. We aspire to inspire millions of others to do the same.
When I was told I was likely to drop dead of sudden cardiac failure if I kept exercising … I did.
When I was told that I might lose my ability to walk and hold things … I did.
When I was told I would need to rely on medications to control my pain … I didn’t.
When I was told that my only hope for recovery was to wait for future drug discovery … I didn’t.
When I was told it was useless to fight my genetic fate … I did.
I was told it would be very expensive and highly improbable to find the culprit gene … and it was.
I was told that even if the root cause were discovered there was nothing I could do about it … they were absolutely wrong!
Patient as Expert
Seizing my moment in this digital age of information, I hacked the online genetic mutation data banks. Targeting the suspected gene culprit, I self-financed it’s sequencing.
I was told I faced impossible odds of cracking my genetic code … but I did: National Geographic: How an extreme athlete discovered her own genetic flaw
Patient as Prescriber
Harnessing the power of my genetic and realtime health information, I invoked the ancient wisdom of Hippocrates (400 BC) - #LetFoodBeMedicine ... walking a cure. Empowered by this information I devised a wildly successful treatment plan.
I was told it was not possible to reverse my progressive degeneration … but it was.
Patient as Collaborator
Against all odds, in collaboration with my Mayo Clinic physicians, my discovery was published in the peer-reviewed Journal of Cardiac Electrophysiology: A Patient Discovered Unifying Diagnosis
It’s Editor-In-Chief said - “ You should feel good about your role in this for it may save lives and/or ameliorate suffering. This is priceless” … and I do.
But, CB and I knew there was so much more we could do to empower, equip, enable and engage others like myself facing a future of early death and disability … so we are.
Patient as Activist
Without access to my health data my breakthrough discovery would not have been made and lives perhaps not saved. I share a patient activist role with Angelina Jolie in “The Medical Blockbuster Book Of The Year”: The Patient Will See You Now - The Future of Medicine is in Your Hands. Echoing the battle cry of e-Patient Dave "Gimme My DaM Data", I have participated as a speaker at professional forums and recently made a video: Gimme My RealTime Data ... It's Mine! highlighting lively debates on patients right to their raw/realtime ICD data.
Patient as Maker
With a burning passion to solve an unmet need, we join the rapidly growing alliance of do-it-yourselfers (DIYs): ordinary people, patients, parents, health hackers and activists who, empowered through crowdfunding platforms and the democratization of medicine and the marketplace, are creating a future of #HealthMadeByUs.
We were told that we face impossible odds overcoming the formidable funding barriers and succeeding … and we do, but that’s nothing new!