Rare Disease Day 2014!
On February 28th, two members of One Breath, One Hope Inc. braved the sub-zero temperatures of New York City to stand in the crowd outside of the NBC TODAY Show Studios at Rockefeller Plaza! Aside from trying to see Matt Lauer, Meghan Montana and Sara Manwaring were hoping to gain some exposure for National Rare Disease Day, which, until this year, was not an officially recognized day of awareness in the US. They were hoping to get some air time for their signs and also pass on some information to the crowd about OBOH and the rare disease community. In the US, a “rare” disease, is a disease the effects less than 200,000 people. Today, there are more than 6,700 defined rare diseases that effect between 25-35 million Americans. That means about 1 in every 10 people is afflicted with a rare disease, not so rare when you think in those terms. The OBOH team got to the plaza very early and were able to stake out some prime real estate right in front of the TODAY Show window. They proudly displayed the brand new banner (thank you Signs by Tomorrow!) along with a great Rare Disease Day sign made by Sara and her family including several pictures of kids with PCD. They handed out pamphlets to the crowd, and even Savannah (a TODAY Show anchor) took one! Many of the shots that panned the crowd showed our signs and our Facebook page received over a thousand hits, it was a great day! The OBOH family had an amazing time telling our story and raising awareness, and as the year goes on, we are looking forward to many more opportunities like this one.
If you would like to be a part of the next big adventure, please let us know by contacting us at firstname.lastname@example.org