Globally, about 7,000 rare diseases have been identified. Compared to widespread conditions that affect hundreds of millions of people, rare diseases can lack similar levels of interest among the general public and the medical and research communities. Most of these individual diseases receive little attention because they affect only thousands—or sometimes only hundreds—of patients worldwide. Collectively, there are approximately 30 million people living with a rare disease in the United States, with more than half of them being children.

Simply put: rare disease desperately needs more attention. The National Organization for Rare Disorders (NORD) asked us to help them raise awareness and increase engagement for this worthy cause. So instead of just making ads, we got an entire town involved.

Ten-year-old Peyton Madden lives with an extremely rare and life-threatening allergy to sunlight called xeroderma pigmentosum (XP), which highly restricts his ability to engage in typical daytime activities without extreme head-to-toe coverage, and with summer temperatures around 105°F, he can easily overheat—a devastating limitation for a child who loves to play outside, ride his bike, and swim. He has never been to the local pool with his friends.

On August 4, 2017, we asked the entire town of El Dorado to come together to transform evening into morning for Peyton: inviting him to engage in all that the community has to offer, but under the safety of darkness.

Rare diseases touch more than just the patients. These conditions also impact families, friends, caregivers, physicians, payors, and communities as a whole. There is an urgent need to spread awareness of the current state of rare diseases and the gaps in care and support. "For those living with a rare disease, the awareness, education, and support of others is paramount," said Peter L. Saltonstall, President and CEO of NORD.

Although there are 7,000 rare diseases and 30 million affected Americans, what’s missing is general RD awareness, and our ask was to find a compelling way to pique the public’s interest in this huge, urgent void. This documentary was focused on encouraging individuals to get involved in the rare disease community—our hope is that by watching how one community came together in a rare act of kindness and humanity to support Peyton Madden, others may be inspired to do the same.

After getting NORD excited by the “night to day” idea, we worked with an NIH nurse who introduced us to Peyton Madden. We immediately took aim at his town of El Dorado, KS, to see if they would be open to participating.

Our idea to transform night into day for Peyton was met with excitement by everyone: Peyton’s family, the mayor, the church and pastor, Peyton’s school, and more. We began to shop our idea to select directors and production companies. Alison Klayman jumped at the opportunity to participate in the project and shared our utmost enthusiasm in bringing it to life.

We worked for 3 straight months—securing safe lighting for Peyton, designing ads for local papers, organizing vendors, producing signage, and procuring Nerf guns and cereal—to finalize the surprise of the “Good Morning Peyton” event on August 4, 2017, and plan the documentary that followed.

In a town of just thousands, nearly 500 people showed up for “Good Morning Peyton,” giving him the “day” of his dreams. To cap it off, the mayor presented an official town proclamation, declaring the evening of August 4th to be “Peyton’s Morning.”

From local radio stations to social media to a feature in the Daily Mail, we saw over 35M total media impressions in the weeks following the event. After debuting at the Kansas International Film Festival, the documentary has had 83,779 total video views on social media, and has been viewed at least once in 77 countries, and at least 20 times in 31 different countries [source: YouTube analytics]. NORD also reports elevated engagement in advocacy and fundraising efforts.