Run for Rare: Advocate Runs Across Country for Rare Disease Awareness; Final Leg of Race to End in San Diego on the Fourth of July

June 30, 2015

(Are you a reporter or journalist? Want to interview Noah, get pictures, or learn more about this developing story? Please contact editor Ilana Jacqueline at [email protected] to set up an interview or request information and photos)

There are a lot of ways to get your point across when it comes to a worthy cause. Some people wear awareness ribbons, others hold bake sales—but Noah Coughlan? Noah is a little different.

The 26-year-old fitness enthusiast decided that running across the country as a one-man awareness machine—that was how he was going to make a difference.

Noah’s brainchild, the 2015 “Run for Rare” started on February 28th, 2015- International Rare Disease Awareness Day at the Statue of Liberty in NYC. Noah ran around Liberty Island and took a ferry to Liberty state park.

“I’m staying focused by listening to the stories of the patients I come across,” says Coughlan. “I am taking a very personal approach and trying to meet as many different patients and families with rare diseases as possible.”

This is nothing new for Noah. He’s a seasoned veteran of cross-country advocacy. After all, he ran across America previously in 2011 and 2013 for one specific rare disease– Batten Disease Awareness.

He was well prepared physically and mentally for accepting the challenge of a third transcontinental crossing. He trained by running approximately 100 miles a week for the three months leading up to Run for Rare.

On average Noah ran 27 miles per day. The distance varied to do things like lodging destinations, weather meaning on some days he would run 13 miles—and on others 40+ miles.


Why Rare Disease?

In the 1990’s, Catie and Annie Allio, two sisters from his hometown of Vacaville, CA. inspired Noah to run by their diagnosis of Batten Disease, a rare brain disease. Noah met the Allio family at a local church when he was only 13. The girls’ father, Joe Allio, was Noah’s youth group pastor and a local Police Officer. This was his initial connection to anything involving Rare Diseases. It wasn’t until he was 26 in 2010 when he fully researched Batten Disease out of curiosity and realized the gravity of this terminal brain disease and the rarity of it among the world’s population.

Noah was determined to educate as many as possible.

“The Run across America idea has worked massively,” says Noah. “People have embraced the message of Run for Rare and have welcomed me to their communities. I have met everyone from a motorist pulling over out of curiosity to the United States Congress.”

“In Mid March, I had a joint Press Conference on the steps of the United States Capitol in D.C. with the Congressional Leaders of the Rare Disease Congressional Caucus and the Energy and Commerce Committee.”

Rare Disease affects 1 in 10 Americans. Want to make a difference? Be an advocate, learn more at and join Noah for the conclusion of his race at 3:00PM on July 4th with a celebratory splash into the Pacific Ocean in San Diego!

Follow Noah as he finishes the last 30 days of his run here:

You can join Noah at the end of his run this July 4th in Ocean Beach, San Diego. 

Details to RSVP:

Noah will be running into the Pacific right past the intersection of Abbott Street and Santa Monica Avenue (across from Wonderland Ocean Pub), be sure you are on the beach to welcome him home along with special guests from the local Law Enforcement, Military, Government, and Media! All of which are coming out to celebrate Noah & the Rare Disease Community!

‪2015 Run for Rare- Press Conference for Rare Diseases with Congressional Leaders:

Run for Rare Documentary:

Updated Press Release:


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