The story is not over yet………

First came the initial 2011 Run for Research.

Next came the encore- The 2013 Run Coast 2 Coast.

Today, I introduce the finale- The 2015 Run for Rare.

Each journey is unique as well as the circumstances and reasons for each respective Run. I find myself in a familiar situation as I prepare for this 3rd transcontinental Run. Allow me to wind back the clocks a bit to explain what happens now.

In 1997, I was introduced to the Allio family at a local church here in Vacaville, CA as a teenager at 13 years old. This is where I first met Catie and Annie Allio, two friends affected by a rare brain disease called Batten Disease. Catie was 7, and Annie was a newborn. The girls’ father Joe was my youth group pastor and a local police officer.

In September 2008, I graduated from the Napa Valley College Police Academy with hopes of becoming a police officer in California. Two weeks later, the Great Recession hit the world markets. Over the next year, I started to see a possible change in my life goals due to these world events.

In 2010, out of curiosity, I researched Batten Disease for the first time as an adult at the age of 26 after reconnecting with the Allio family. It bothered me when I found out just how rare Batten Disease was……3,000 children globally out of 7 Billion people on the planet. Inspired to do something big, I engineered a bold plan and took a Leap of Faith. I had no idea what was about to happen.

In 2011, I honored the initial commitment to raise major Awareness for Batten Disease on the Run for Research with guidance from the national Batten Disease Support and Research Association. With a rotating support crew and vehicle nearby, I completed a 132 day trek on foot across America from San Diego, CA to Jacksonville, FL through the deserts of the Southwest to swamps of the South. As I met dozens of other children and families affected by Batten along the route, the story grew as well as the challenges. I was as surprised as the rest of us when I actually stepped foot in the Atlantic Ocean.

In 2013, I followed up with an appropriate encore on the Run Coast 2 Coast in an attempt to raise further Batten Disease awareness for a different set of families on a separate northern route across America. The one catch was I went solo and unsupported pushing a jogging stroller full of necessary supplies. I attached an 8 foot wooden pole and 3’ x 5’ American Flag to the stroller to show my appreciation for the country I live and love. I had no idea what was about to happen.

What started out as just another Run across America to elevate Batten, soon became a story about America and Her People. From the first mile in Half Moon Bay, CA to the final step in Boston, MA, I witnessed first hand and up close the true kindness and generosity of the American people. I met people from all walks of life, upbringings, backgrounds, religious beliefs, and more. The American people became my support crew. People opened their cabins, hotels, churches, restaurants, and arms to me as I ventured toward the Northeast.

In the final month, I paid my respects as I passed by the Flight 93 Memorial in Shanksville, PA. In the final week, I spoke to the high school students at Newtown High School at Sandy Hook, CT. On the final day, on behalf of the State of Massachusetts and City of Boston, I was greeted by the Presidential Police Escort unit of motorcycles and police cars and escorted through the streets of Boston past Boylston Street and to the Atlantic. On the final step, the United States Marines Corps was present to salute the American Flag as I stepped into the Atlantic Ocean.

After 4 Marathons, 2 Transcontinental Runs, 25 States, 5,600 Miles, 45 TV News, 28 Newspapers, 23 Radio, 7 Magazines, and a few National and International media interviews, I am ready for the grand finale.

As of 2014, I learned, studied, and connected with leaders in the Batten Community as well as leaders in government, science, and technology . I reached out to my local, state, and national leaders. My hometown of Vacaville, home County of Solano, and home State of California has been nothing but supportive and receptive to the cause. Here is the twist. I found out Batten Disease was just the tip of the iceberg.

To help tell the totality of Batten, I researched more into Rare Diseases as a whole and was alarmed at what I found. Globally, there over 7000 known Rare Diseases affecting 350 Million people worldwide. In the United States, an estimated 30 Million Americans are affected by a Rare Disease. That is one-tenth of the population. I call that a significant social issue, if not already an impending crisis.

What I never told anyone until now is about the thousands of other people I met across America battling a Rare Disease. I met them in grocery stores, hotel lobbies, on the side of the road, in an airport, and in general. These are people in my OWN town. The Rare Diseases story is one that is woven into the very fabric of our local communities and daily lives.

So, what can I do about Fragile X, Friedreich’s Ataxia, Koolen-Devris, CHARGE Syndrome, MPS, San Filippo Syndrome, Niemann-Pick, Rett Syndrome, Kawasaki Disease, and more?

 

I will Run- one final time.

 

I must now help tell the story of RARE. I am joined in my efforts with many leaders in healthcare, industry, and government both locally and nationwide. I am joined by filmmaker Ezio Lucido and the Luminous Media Group for a feature length documentary in development. I am also joined by NorthBay Healthcare Foundation and the Commitment 2 Care to assist in this effort.

Join me on this 2015 Run across America from New York to California. I will do everything I can to get as many Rare Disease stories told in cities big and small.

Isn’t this what America is all about? The freedom to dream big. The freedom to take action. The freedom to have your voice heard. This is the Land of Opportunity. The America I know is one of endless opportunities if we are willing to work hard enough. I have seen it firsthand. We’ve reached for the Heavens and put a man on the Moon. We’ve risen up to defend and protect our Ideals and Democracy. I firmly believe we can come together in support for the rarest causes of our citizens. We can find a way to advance cures and work together to improve the quality of life for us all. We have to solve this by taking progressive steps to promote and improve the health and general welfare of our fellow man, woman, and child. I am hopeful. I have never been more proud to be an American. I believe.

America has always been, and is now, defined by her People and their willingness to come together and lift each other up and help each other out. We can do this. I ask you to join me in these efforts.

I would also like to note that this is a Global issue. These diseases know no national or political boundaries or state lines. They need no passport. We as an International community must come together to push the RARE causes forward.

I leave from the Statue of Liberty in New York City on World Rare Disease Day on February 28th, 2015.

I will again be carrying the American Flag from Coast To Coast.

This time I start in Winter and run to Summer.

This time I run from Atlantic to Pacific.

This time in 2015, I take the final step of my final Run exactly where I took the first step of the first Run in 2011.

This time I Finish by returning to the Start at Ocean Beach in San Diego, CA.

This time I Run for Rare.

One quote that I always keep in mind:

“I am only one, but I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something that I can do.”

– Edward Everett Hale

-Noah Coughlan

https://www.run4rare.org