Earl Cole is a positive force of nature, using his large public profile to help kids work through a rare disease that has never held him back.
As a child, Cole was diagnosed with Legg-Calvé-Perthes disease, a rare hip bone condition affecting five out of every 100,000 kids. It makes it painful to walk, run, or even play like most children. To treat the disease, he spent time in an A-frame support, awkwardly attaching his two ankles together.
Cole was nonetheless able to become a high-flying advertising executive and take control of life, even entering — and later winning — the TV show Survivor. Writing on LinkedIn, he says he’s skilled at turning creative and scientific ideas into “powerful narratives, policies, and socially-responsible business strategies” for large companies.
Crucially, in 2007 he founded Perthes Kids Foundation to raise money and awareness for the condition he’d lived through as a child. He developed the initiative in partnership with the University of Kansas Medical Center and KU Endowment Fund. In 2013, he created “Camp Perthes,” a summer camp programme for kids and volunteers diagnosed with Perthes disease. The initiative has expanded across the globe and serves “hundreds of families every year,” with locations in the US, Australia, Argentina, South Africa, Japan, Italy and Spain.
The initiative formalised in 2015 as the “first national nonprofit organisation to support children and families” affected by the condition.
“Through global advocacy, innovative programmes, and cause-based marketing, [I] was able to grow the organisation to currently being the largest patient organisation in the world dedicated to this particular disease,” he writes on LinkedIn.
The programme implements community programming and fundraising events to advocate for research, education and awareness. It works alongside doctors, hospitals, government and corporate partners. There’s a combined social network of 20,000 strong.
The organisation’s work has been featured in media outlets such as CBS, FOX, People magazine. They’ve been successful on a national level, forming a partnership with Miracle Flights to provide free flights for kids with Perthes disease — both to attend Camp Perthes USA, and to visit Perthes doctors around the country.
In addition, Cole is the founder of Singular Science, a medical technology company focused on speciality patient healthcare, DNA governance and pharmaceutical data / analytics for treating rare diseases around the world.
He also works as the official liaison between NORD (National Organisation for Rare Disorders) and the state of California to improve the quality of life of patients and their families; is on the Scientific Advisory Board for Rare Disease Ghana Initiative, which works with Government and Government agencies to develop a national policy for genetic and rare diseases in the country; and is on the Community Advisory Board for EURODIS, which represents 30 million patients affected by over 5,000 distinct rare diseases.Tags: Perthes, Perthes Kids Foundation, rare diseases, USA
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