WHY IS DE:TERMINENCE AND THIS CAMPAIGN IMPORTANT?
Whether it’s Cancer or Diabetes, Friedreichs Ataxia or Asthma, Thyroid complications or MS, we all know somebody whose life has been drastically impacted or altered due to a disease or disorder. Some people have inspired us to live every day to the fullest extent possible, and others have unfortunately let their circumstances get the best of them. No matter who you are or what you’re up against, everybody wrestles with hopelessness at times. With the help of our contributors and the mission of de:terminence, we are setting out to inspire hope, create hope, and to show the world that a more fulfilled and engaged life can be lived NOW, no matter the circumstances.
My name is Sean Baumstark and in 2007 I was diagnosed with a debilitating disease called Friedreich’s Ataxia (FA). FA is a rare, degenerative, neuromuscular disease that causes progressive damage to the central nervous system, threatening to put me in a wheelchair and cause an array of other issues including loss of vision, fatigue, scoliosis of the spine, slurred speech, diabetes, and ending life much too early due to heart disease. Since my diagnosis I’ve run a half marathon, competed on a 12-man relay team running 178 miles in 32 hours, hiked several mountain peaks, pedaled my bicycle from Sacramento CA to Las Vegas NV, competed on a 4-man team in Race Across America (cycling 3,012 miles from coast to coast), and carried the Olympic Torch during the 2008 Olympic Torch Relay.
When I realized that my ability to walk, run, or really get around on my own will eventually go away, I was immediately determined to do what I can, while I can, because I can! I refuse to let my circumstances dictate or govern my everyday life – and I hope to inspire other people to live beyond their own circumstances no matter what disease or disorder they are up against. Beyond inspiring them, I want to help people accomplish their own physically challenging adventures for the sake of awareness, health, and life.
THE MAGNITUDE OF YOUR CONTRIBUTION
We believe de:terminence can and has the ability to impact the lives of thousands all over the world as we build, launch, and grow. de:terminence is not about Sean or Friedreichs Ataxia. Instead, it’s completely about inspiring, enabling, and assisting others to live a more fulfilled life in the midst of whatever disease or disorder they are up against. Although important, we aren’t setting out to directly fund research or cures…We are on a mission to help those in need of a cure live a more fulfilled life NOW. Hopelessness and a life lived on the sidelines are our enemies.
You will be helping build de:terminence from the ground up. First things first, de:terminence needs to file for 501(c)3 status (non-profit), write our bylaws, put a board in place, and lay all the basic bricks necessary for an organization to legally operate and do so for decades to come. We are not organizing an event, or just looking to influence our neighborhood. Instead, we are facilitating a way of life for people all over the world.
We are looking for people like you to be a part from the very beginning.
We have vision. We have passion. We have courage. We have ambition. We have creativity. We have great talent and advisors behind de:terminence. What we need is a jump start on our startup capital.
WHAT WE NEED & WHAT YOU GET
At the very least, we have launched this campaign to enable us to file what is necessary to legally start the organization – from filling for 501(c)3 status with legal help, pay state and federal fees attached to filing, state and federal fees required to start a business, to drafting our bylaws and furthering our launch promotions.
Also, we’ve assembled a team of 12 to compete in the Reno-Tahoe Odyssey, May 31-June 1, in order to raise awareness of de:terminence and promote this campaign. The Reno-Tahoe Odyssey is a 178-mile relay run beginning in Reno, NV running south around the west side of Lake Tahoe and back to Reno via the east side of the lake, non-stop over the course of 30 hours. Some funds raised in addition to startup costs will be used to send our team with all necessary equipment and enhance the team’s promotional efforts and its brand presence during the race (i.e. appropriate gear, supplies, vehicle magnets, etc.). Participation in the Reno-Tahoe Odyssey 2013 is Team de:terminence’s inaugural launch event.
Beyond filing the start of a business, applying for 501(c)3 status, tying up loose ends for the “team de:terminence” relay in the Reno-Tahoe Odyssey, any additional funding will be used toward the design and development of the de:terminence website and the design and implementation of a pilot program for 3-5 individuals in the United States.
No matter what is raised from this campaign, those behind this launch are committed to being transparent with the use of our funds and allowing others to view and advise on the management and expenditure of funds in order to foster strong financial practices, sound use of funds, and allow for accountability.
WHAT HAPPENS IF WE DON'T HIT OUR GOAL?All funds will be used to help legally and formally establish and launch de:terminence as a non-profit organization and will advance the vision and passion of its decision-makers to impact the world. The funds raised or lack thereof will not determine the existence of de:terminence, it will however impact the degree and speed at which things develop.
Many sources tell us that there are over 7,000 rare and orphaned diseases in our world today. Of those diseases, an estimated 30 million Americans are affected and more than ten times that are affected around the globe. Somewhere between 75 and 85% of those diseases are caused by damaged genes. (That “7,000” does not include the more “common” diseases).
Hundreds of organizations, researchers, and doctors are working feverishly to treat, cure, and eradicate some of those diseases. In the meantime, those of us waiting (hoping) for a cure are trying to find ways to live more fulfilled lives - despite disease, disorders, disabilities, and limited financial resource to support the necessities of life AND manage health to the degree that is necessary. (No matter what age, social security and/or disability aid is, in most cases, laughable).
Sean has been able to participate in and accomplish several amazing feats considering his disease. He’s also been given many opportunities to travel and share his story and the vision behind de:terminence, over the last couple years, inspiring hundreds of people to take an interest in the vision and mission of de:terminence. Now it’s time to move people into action in order to inspire and enable others living with a disease or disorder that jeopardizes their quality of life, or life itself.
To see more on Sean and/or de:terminence, please visit www.seanbaumstark.com
OTHER WAYS YOU CAN HELP
Make some noise:
Money isn’t everything. Whether you contribute or not, the noise you can make that will bring attention to this campaign is essentially invaluable. We can’t do it ourselves. If you believe in the movement and the legacy that de:terminence is setting out to develop, spread the word about this campaign. Utilize every medium you have in regards to social media – Facebook, Twitter, Instagram, personal websites, blogs, texts, emails, phone calls, faxes and telegrams! Link people to this campaign so that we not only increase the funding potential, but more importantly gain attention for what de:terminence is and what we will do to impact the world. Throughout the length of this campaign, please constantly remind your friends and family to check it out and to share amongst their own circles of influence.
Volunteer your skill:
If you have a skill that may help someone else conquer something great (i.e. trainer, moutaineer, rock climber, cyclist, runner, etc) and are willing to accompany team de:terminence on an excursion(s) to help others achieve, make yourself known. You can email: