In October of 2010 I was 26 years old. The US economy was in free fall in the Great Recession fallout of 2008. The world was different back then. As a recent Napa Valley Police Academy graduate, I was set on joining a California Police Department. It was pretty obvious to all across the world that an economic crunch was happening. Positions were being eliminated. Hiring was at a virtual freeze and snail pace across all industries.

I sat down with my Church Pastor from my youth a decade before. Joe Allio, also a Lieutenant from the neighboring Police Department in the town of Fairfield, CA and his wife Kathy. I had an idea. A hunch. Knowing I was battling a giant of trying to get hired anywhere in law enforcement, I shifted my focus. Joe and Kathy has 6 children, 2 of whom were affected by a rare brain Disease called Batten Disease, a genetically inherited disorder.

“Joe, I’m going to run across America for Catie and Annie. Let’s see if we can find a cure.” The parents were surprised and gave their approval. Little did I know that the 1st Run across America would succeed. As an athlete, I knew I was strong enough to attempt it.

Years before, my father Dave suffered a medical emergency and had his leg amputated in 2001. His first call besides my mother was to Lt. Joe Allio during the drama.

Batten Disease- Children are born healthy, and over time develop loss of sight, speech, motor skills, cognitive loss, dementia, progressive seizures, and leading to children bedridden, unable to communicate, a feeding tube, and eventually death. There is no cure. There are scientists and doctors working on treatment currently.

The 1st Run was successful. I was able to tell Catie and Annie’s story across 8 States, dozens of media interviews, 2,500 miles over 132 Days from San Diego to Jacksonville, FL and also get other children with Batten Disease and families on the news.

One of the first families to contact me in America was Tony and Mary Heffernan from Ireland. I dedicated a few days of running to sharing the Bee for Battens Ireland story about their 2 children Saoirse and Liam.

Saoirse lost her battle in 2010. Catie lost her battle in 2012.

In 2013, two years later, I had an opportunity to go again on a northern route through Northern US States for 3,300 miles over 108 Days. I plotted out the map compared to where each known Batten family lived and it was a relatively straight line from Half Moon Bay to Boston. California, Salt Lake City, Denver, Nebraska, Iowa, Indiana, Illinois, and many other States leading to Boston.

This 2nd time I carried the American Flag coast to coast and was honored with a 42 Car Presidential Police Escort from Boston and Mass. State Police coming only 6 months after the terrible Boston Marathon Bombings. The United States Marine Corps arrived to appropriately retire and fold the American Flag. We honored America and the fallen victims.

But, there is no way to tell a story of one Rare Disease without telling them all. The narrative of no hope, no treatment, and no cures is being lived and died by millions of people around the globe. In America, 30 Million are affected by a Rare Disease. 1/10th of the population. Diseases such as Hunter’s Syndrome, and Fragile X, and CRPS, and KAT6A and GNLY1, and 7,000 more known rare diseases.

Liam Heffernan in Ireland lost his battle against Batten Disease in 2014.

So, I ran a 3rd time. For all Rare Diseases in 2015. New York City to San Diego, CA. 3,000 Miles in 127 Days. My final Run across America ending at the exact spot I took the first step in 2011. I stopped by Washington DC and spoke with the US Congress and made grand speech and reason every government should be engaged on this issue.

2015 Joint Press Conference with US Congress

A poetic finish with Joe and Kathy and Annie at the finish on July 4th, 2015 flanked by 12 California Highway Patrolmen on motorcycles and the USMC at the beach to again fold the American Flag.

I took 5 years off. Those runs were productive. I’m glad they happened. But, my body and mind needed a break. I was broke. I intentionally don’t make one cent off the efforts. I rely on the kindness of sponsors and the public, as did the misc film teams who worked almost pro bono because we believed the stories needed to be told and told now.

We try our best to fundraise and get as many families on the media as humanly possible. Awareness first. Then fundraising. The public needs to know the diseases exist in the first place.

Fast forward to now, and I discovered in 2016 I was eligible to get Irish Citizenship via descent through my grandfather Myles. I never met him. He came to America via the RMS Republic from Cobh, Ireland in 1904. Traveled to Boston, then NY, then began a family in California.

Myles was hit by a vehicle in Oakland, CA in Dave in 1951 in front of my 11 year old future father. He died a year later from pneumonia and complications of the accident.

In 2020 at 36 years old, the Run4Rare Ireland run is hours from its start. In Cobh. At JFK Memorial Park at 10AM February 15, 2020. As an Irishman. As a dual citizen. This 4th Run will take me 32 Days and 600 Miles. I will be carrying the Irish Flag to honor my grandfather. I will become the 1st Person to run across America 3X and Ireland 1X.

I will be raising funds for Bumbleance, the Children’s National Ambulance Service appropriately founded by Tony and Mary Heffernan in honor and memory of their 2 children Saoirse and Liam.

https://www.saoirsefoundation.com

And I will end in Dublin on St. Patrick’s Day completing almost a decade of running. 2 Countries. Countless family stories. 2 Flags. My heritage. My contribution to leave this world a better place.

This is Run for Rare. #Run4Rare. A promise to the Allio family that I would do everything I could to help their daughters.

A final twist, I am wearing the last necklace Catie made before she lost her ability to move her hands, and wearing Annie’s lucky green Irish beads.

Press release here with more details.

https://www.prlog.org/12806942-story-115-years-in-the-making.html

Best,

Noah Coughlan

https://www.run4rare.org