Mikyla-Cure is an organization that was founded by Robert & Annie Smith. The goal of the organization is to raise funding towards cutting-edge research to cure Rett Syndrome, a neurodevelopmental disorder that affects thousands of young girls, including their daughter Mikyla. Approximately one in every 10,000 girls is born with Rett Syndrome, so finding a cure will mean more than saving the life of their daughter Mikyla– it will mean saving the lives of thousands of children like her.
Fortunately, several amazing breakthroughs in the the fight against Rett Syndrome have been made recently and more research is currently underway. This is great news and suggests that a cure is within reach, but there is still a long way to go. Time is of the essence for Mikyla and thousands like her, but there is hope. With the research projects currently in progress and recent breakthroughs that have been made, we firmly believe that Rett Syndrome can be the first neurodevelopmental disorder to be cured!
If you need further inspiration in joining Mikyla-Cure, Scott Parsons has recently quit his job and taken it upon himself to ride across the country to raise money and awareness for Rett Syndrome. You can read more about Scott here and more about his ride across America here. Scott will be posting updates from the road, so be sure to come back often. In the meantime, please join our effort to support Mikyla-Cure and Scott's ride across America!
The Mikyla-Cure Mission
Mikyla-Cure is an organization whose goal is to raise awareness of, and become the leading fund raising organization towards cutting-edge research to cure Rett Syndrome. Mikyla-Cure prides itself on working with some of the best researchers and scientists in the Rett Syndrome field. Projects will be strategically aligned with current research and performance based. Mikyla-Cure believes Rett Syndrome will become the first curable/treatable childhood neurological disorder. We owe that belief to Mikyla, as well as thousands of girls suffering with Rett Syndrome every day.
We gave birth to a beautiful baby girl named Mikyla My Elizabeth, on August 15, 2006. By all accounts Mikyla was completely healthy. We reveled in her progress, marveled at her infectious smile, and imagined the unlimited possibilities that lay ahead of her. By eight months, however, our joy had been replaced by a gnawing apprehension that all was not right with Mikyla's development. Her progress had stalled and she was no longer reaching her milestones. Countless trips to specialists began and a battery of tests were undertaken. Days before Christmas 2007, the geneticist first uttered the words Rett Syndrome. We waited an entire month to get the test results back. In early January, we received the lab report which confirmed it was indeed Rett Syndrome. In an instant, our dreams were shattered.... from building sandcastles to seeing her off to college. Every parent's worst nightmare had become our reality.
At almost two years old, she does not crawl, roll, stand or feed herself, and can only eat pureed foods. She can sit on her own, but cannot get into a sitting position. Her babble ceased and we never heard the words Mommy or Daddy.
Despite this devastating disorder, she greets you with bright eyes and a huge smile when you come to get her in the morning. Her belly laughs are the most contagious sound you've ever heard. Musical toys, Baby Einstein, and books are the way to Mikyla's heart.
We have many goals for Mikyla; to walk, play and have fun like a normal child, but at the end of each day we are still faced with a monster named Rett Syndrome. We cannot fight with rubber swords and passive hope. We want to see normal development restored to our daughter while she is still a child. Accepting her fate is not an option... a cure is within our reach. Please join us in the battle to save our daughter's life... help us find a cure for Rett Syndrome.
Robert and Annie Smith
There's a good chance that if you're visiting this website you may already know me and my story. In the event that you don't, the next few paragraphs are intended to explain how I came to ride for "Mikyla-Cure"
I've always loved bicycles. It's a passion I inherited from my grandfather who owned a bike shop during the early 1950's. One of my most vivid childhood memories is selecting my first real bicycle for my 7th birthday (a yellow Schwinn Stingray with a banana seat). It was a big event as my parents, grandparents, and I went to the bike shop to make a choice.
Quickly I discovered the freedom, power, and joy that riding bikes can bring you, and I became aware that people made livings riding bicycles. I learned about the grand tours and the lives of professional cyclists, for some reason, in my young mind, I equated those things with riding my bike across the country. That's when I decided that some day I was going to do just that.
From that point until now, the idea of crossing the country by bicycle has been growing in my mind. Over the years there have been times when I believed it may never happen and times when I believed it had to happen. Just like everyone else, I worked to build a family, a career, and a life, but my dream of crossing the country was always spinning in the back of my mind.
In my life I have built a quality career with an exceptional company (Georgia Pacific). I was fortunate to have many great successes and to work with an excellent team of professionals. I learned an immense deal about business, people, and achievement; however my cross country dream has remained unfulfilled.
Early in 2008 several events transpired causing me to question my future as the Western Vice President of Sales for GP and consider taking the chance to achieve one of my greatest dreams. I came to the conclusion that I'd completed all I could in my current career, I had reached my maximum potential in professional responsibility and I didn't believe I had much else to contribute.
Then, during a bike tour of California, I had the opportunity to spend several days with a cycling friend of mine, Robert Smith. While Robert and I rode with the tour group I learned that his daughter, Mikyla, had recently been diagnosed with a disease called Rett Syndrome. Rett is a severe and debilitating disease; currently robbing one in 10,000 young girls of their motor skills and ultimately preventing them from understanding the incredible satisfaction of pursuing and achieving their dreams. At the time, I thought it was incredibly sad, and I thought about the fact that all too often, we as healthy adults, find excuses, or reasons not to pursue our goals and dreams. Many of us repeatedly choose the easy path of a good life rather than taking the risk necessary to have a great life lived without regret. Again, my dream of crossing the country rose in my thoughts.
During a number of conversations with Robert, I discovered that scientists have been successful in reversing the effects of Rett Syndrome in lab mice. This points to a tremendous potential to reverse the disease in humans; giving back the hopes and dreams of thousands of young girls and their families. In an effort to raise funds and awareness of the opportunity to cure Rett Syndrome Robert and his wife, Annie, launched a charity called "Mikyla-Cure" (mikyla-cure.org).
Suddenly, the fear of taking a "risk" to leave my job and fulfill my dream seemed trivial and was replaced by a growing idea that an incredible opportunity existed. This was an opportunity to ride and potentially give thousands of girls a chance to pursue their dreams. As a result, I have elected to pursue my dreams while hoping to help others, less fortunate, to pursue dreams of their own. My hope is to inspire you to see that anything is possible if you choose it to be.
On May 15th 2008, I elected to step away from my career, put my "life" in storage and start a bike tour across the country; riding for the simple hope of helping Mikyla Smith have her own dreams someday, while also fulfilling my dream. Perhaps my dream and the possibility of Mikyla's dreams will inspire others to pursue their desires while they still have the time and their health.
At this point it's too early to know whether I'll succeed at any of these goals, but, already I've been overwhelmed by the outpouring of support, encouragement, and understanding that my choice has created. If these reactions are any indication of what's to come, I believe that this journey will prove to be a phenomenal success. With that in mind, I'll begin my trip from San Francisco in a few days and, with any luck, many of you will elect to join me along the way and/or contribute to the cause of Mikyla-Cure.
Pursue your own dreams and also help spread the news of "Mikyla-Cure" as we race to find a cure for Rett Syndrome. Make it a great summer!
About The Ride
Scott's route (shown above) is rather ambitious... at just over 5,000 miles according to Google Maps, Scott hopes to cover the distance in 110 to 130 days. After factoring time for rest days (which will really be days spent mountain biking) and side trips, that means he'll average around 60 miles per day in the saddle.
That may sound crazy, and it is, but Scott hopes his effort will inspire you to learn more about Rett Syndrome. Some of the places Scott plans to visit along his route include: San Francisco (where he'll depart), Portland, Seattle, Glacier National Park, Crazyhorse, Badlands, Mt. Rushmore, Green Bay, the Upper Peninsula, Niagara Falls, the Adirondacks, Vermont and Boston (where he'll end his journey). Along the way, Scott also plans to take a side trip to Leadville, CO and complete the Leadville 100 mountain bike race.
While we can't all be as crazy as Scott, it's kind of inspiring to know that people like him are around. To read even more about Scott's route and take a look at more detailed maps, check back soon, as we'll have a full report.