AWESOME first day to the 2015 Run 4 Rare! 3 News Interviews, 1 Statue of Liberty, 1 Ellis Island, 1 beautiful NYC view, family, friends, many Batten Disease Community friends who are now my family, plenty of close calls and dramatic last minute sprints to catch our departing boats, one stellar top knotch LUMINOUS R4R Campaign and documentary group , zero hours sleep, almost done running right now, a short 13 mile day to pace myself, wait until you read the blog tonight! And check out WABC 7 NYC and NEWS 12 six o’clock and 10 o’clock broadcasts, one semi functional stroller, one dog bark, black ice, a slight fever and chest congestion, a 14 degree start in under armor spandex, 1 NJ State Park Police escort, but all equals ====== the start to massive RARE DISEASES AWARENESS…..taking the message Interstellar to the next galaxy and dimension. 1 day down, 126 to go! I’m fired up!! BUT first, a THANK YOU to all of the followers and supporters! I am reading all the comments and tweets and emails, replying back when I can find time. Keep it up! I am adding help to the R4R team rapidly. Thanks!!! Let’s remind the world that EVERY LIFE MATTERS! The 30 Million Americans with RARE are real people, not a group of numbers. I will meet them all if that’s what it takes to cause a paradigm shift to CARE for RARE. The 2015 journey has begun where 2013 left off. Epic fashion. Time to finish the job, stay safe, and get as many RARE stories told because RARE is NOT that rare on second look. I’ll prove it you. Thank you followers and supporters. YOU motivate me! ‪#‎run4rare‬


Update: I am exhausted. PICS and Video links now



7AM -Liberty Island w/ Park Official Caval Farrell


710- Liberty Island with Luminous Pictures, Run for Rare Director Ezio Lucido


725 AM- Ramblings of a Madman

IMG_0414 805 AM- Ellis Island


10am – Liberty State Park- First TV News Interview

IMG_0526 2nd TV Interview News 12 NJ

IMG_0460 3rd TV Interview WABC 7 NYC


The only picture we didn’t look miserable frozen. Lol. Much love for the New York and New Jersey parents representing Batten Disease as well as Barbara Lavery from my top partner Global Genes who braved the cold to come to start! We have Eric Faret, Fred and Janet Surrey , Dave and Joan Napolitano Ortland, Peg-e Lynn, Michael De Peri Sr., and Cheri Whobrey out from Colorado. They have been great with notifying the local media. They have been key mentors to me over the years as I have learned to navigate delicately and appropriately with rare disease and special needs issues. The experts and TRUE heroes here. Round of applause to the parents of children with any special needs!!! Champions! #run4rare #BattenDisease


Carrying a Photo of Catie and Annie Allio (the inpsiration and genesis of all Runs) across America to Ocean Beach, San Diego, -going back to the place of the First Step of the 2011 Run when I had no idea what to expect from running across America. Ending 2015 at the 2011 Start. This is my FINAL Run across America.

Also, carrying a pin given to me from Mayor Len Augustine from my hometown of Vacaville, CA;

and carrying a pin for Global Genes, partner of Run for Rare, “HOPE- It’s in our Genes.” 


Chat with NJ State Park Police- followed by an escort to the public road


“Standing, FROZEN, in the Life I’ve Chosen” with Run For Rare Documentary Director/Producer Ezio Lucido from Luminous Pictures

“The Cold Never Bothered Me Anyway”

Running into Newark, and off to Elizabeth for a short 13 Mile Day

-The End-

Noah Coughlan “aka” NoahOnTheRun v. 3.0