What do you say when you meet a hero? Do you thank them? Do you ponder how they achieved greatness? In the case of Noah Coughlan, how do you express your gratitude for sacrificing so much to advocate for rare diseases? I still don’t have the answers to any of those questions.
There was a lot of anticipation leading up to the big finish. I woke up at 1am California time to fly cross country to see the big #Run4Rare finale. I couldn’t imagine missing such an important day for the rare disease community. The lifeguard station on Ocean Beach made an announcement ahead of Noah’s arrival. I was amazed to see so many beach goers stop what they’re doing to watch. Hundreds of people on the beach learned about Noah’s mission.
I’m not entirely sure I could ever put into words the pride I felt on July 4th. It is surreal to meet someone who has such a passion for the rare disease community like Noah.
After the festivities on the beach, we headed over to the Hyatt for a banquet to honor Noah. It was so wonderful to spend some time in a room with other rare families that just get it. Hearing stories from Ezio Lucido, Noah’s mom and other rare disease families really emphasized the need for this documentary.
Noah’s run may be over, but the journey has just begun.
I was honored to share a few remarks about my rare disease journey and where I hope to be involved in the future. #Run4Rare is the catalyst needed to truly raise awareness for the 30 million Americans who suffer from rare diseases and disorders. It is difficult to focus on advocacy while trying to deal with the tumultuous issues that arise from living rare. This is why Noah is such a hero, he has taken up our cause to spread awareness across the country. People on Ocean Beach in San Diego may not have known about rare diseases before July 4th, but they will certainly remember it now.
The minute you meet Noah, you can tell he has a big heart. He is compassionate, extremely intelligent, well spoken and has a presence that makes him the perfect advocate. Not every cause has someone like Noah, which is why the rare disease community needs to rally behind him and the #Run4Rare documentary.
So Noah, thank you. You have inspired people to find their voice to advocate for themselves and their families. While the running is finished, the wave of advocacy you created has just started. I cannot wait to see what the future holds, but it is already off to an incredible start.
To learn more about Noah’s run and the upcoming documentary, visit the website www.Run4Rare.org