Noah had been running to rally support for the 30 million Americans affected by rare diseases. There are over 7,000 known rare diseases – affecting 1 out of every 10 Americans. Noah’s inspiration to run comes from his personal connection to two childhood friends battling a rare brain disease called Batten Disease. Noah’s efforts demonstrated that just one person can truly make a difference. During his “Run4Rare” he was interviewed by many media outlets, met with lawmakers, engaged patients and families, and rallied support for the scientists and researchers attempting to find cures for rare diseases.
Throughout his journey Noah dedicated his daily miles to a different child or adult battling a different rare disease. On May 29, 2016 he dedicated his run to Marc Yale and the entire pemphigus and pemphigoid community. He ran an average of 25 miles per day battling adverse weather conditions and physical exhaustion. Noah ran solo while pushing an 80 pound jogging stroller of supplies. Above his stroller waved a large American flag given to him by the United States Air Force. The American flag Noah ran with every day was officially retired in a moving ceremony at Ocean Beach, CA when he arrived on Independence Day.
Noah’s unwavering dedication to be the voice for the rare disease community by running across the U.S. three times was inspiring to many advocates. One patient stated at a reception, sponsored by the National Organization of Rare Disorders (NORD), following the transcontinental run, “that he created a bridge for all rare disease groups to work together.” The impact that Noah delivered during his “Run4Rare” was to show that every person matters. Noah’s message of hope for patients with rare diseases has reached the halls of congress and every community he passed through on his journey. His passion and tenacity as an advocate should remind us all that we need to advocate for ourselves as well as the entire rare disease community.
