Global Genes | R.A.R.E., during its 1st Annual RARE Tribute to Champions, will be honoring Bill Barkeley for his incredible efforts in support of Usher’s Syndrome, but also for his work to raise awareness, funds and provide inspiration to everyone with a rare, genetic or chronic conditions.
We are so grateful and honored that Bill will be joining us as a RARE Champion Award Recipient at this important event for the rare disease community. Bill is a true champion in every sense of the word, and his commitment to this community, its families and patients is unwavering. It is our honor to host him at our event in September.
Blind, Deaf and Climbing Mountains
There are only a select few who we might consider adventurists – some may climb mountains, walk on tightropes across Niagra Falls, and ride for miles in desolate conditions in a Rickshaw. In politics, we may refer to these adventurists as reckless, risky, and unpredictable. In the life of a rare disease patient or advocate, the journey begins as a roller-coaster ride of an adventure that in many instances has no end in site.
Meet an extraordinary adventurer – Bill Barkeley. Daring, courageous, and determined, Bill is a testament to advocacy and awareness for rare disease. He too climbs mountains. In particular, Bill’s journey with Usher’s Syndrome has been its own adventure. Not learning of his rare disease, one of 15-20,000 in the U.S., until his teenage years, Bill has had to function in a world that few have ever known or endured.
Bill Barkeley graduated from the University of Southern California in 1984 and upon retiring after 25 years from a Fortune 500 company, Bill has led a successful life as a deaf-blind adventurer. He travels the world as a public speaker and advocate, sharing his pilgrimage of life with Usher’s Syndrome.
And Bill has climbed mountains. In addition to climbing Mount Quandary, Bill climbed Mount Kilimanjaro in Africa as a project for assistive technology for the deaf-blind.
It started as a hope and a dream and hundreds of people got me up Mt. Kilimanjaro. I know that I am changed forever as I am passionate in helping others especially the hearing and vision impaired.
In 2012, Bill took on one of the most arduous’ running races in the U.S. – the Boston Marathon. He not only finished the race, with Team Mass Eye and Ear, he raised over $400,000 to raise funds for research on behalf of Usher’s Syndrome.
And his travels to worldly and unimaginable destinations, have been a necessary calling for Bill as he is determined to focus on building a “Life Without Limits“. Through his motivational speaking to non-profits, corporations and schools, Bill centers his discussions around overcoming adversity, planning, excellence, community and teamwork.
As a deaf-blind advocate, Bill acts as board member, leads and collaborates with many related organizations: The Association of the Blind and Visually Impaired, Hearing Loss Association of America, Metro Health Systems, Foundation Fighting Blindness, Global Explorers and No Barriers USA.
You can learn more about Bill, listen to his World Adventures, and/or find information about his speaking engagements here.