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Click Here for 2011 CRN Family Conference Online Registration
Conference Registration Packet:
 2011 CRN Family Conference - Registration Packet Main Page
2011 CRN Family Conference - Registration Form
2011 CRN Family Conference - Reaching Beyond the Clouds
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Hotel Nikko Directions
Conference Information:
2011 CRN Family Conference Set for July 14-16 in San Francisco, California
2011 CRN Family Conference - Final Agenda
2011 CRN Family Conference - Poster Session Requirements
2011 CRN Family Conference - Poster Session Abstracts
Research Participants Needed - Parent and Adult Focus Groups
Research Participants Needed - Quality of Life Research Participants
Reaching Beyond the Clouds: Cindy Abbott to Kick off CRN Family Conference
The Cystinosis Research Network is pleased to announce that Cindy Abbott will kick off the 2011 CRN Family Conference in San Francisco as our Inspirational Speaker on Friday, July 15th. On August 1st 2007 , she was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , she summited Mt. Everest . With a rare and potentially life-threatening disease, at the age 51 and functionally blind in one eye she became one of the 400 Americans who have climbed the world’s tallest mountain. Her journey to Mt. Everest began three years ago but her story, like so many other victims of rare unknown diseases, started more than a decade earlier.
Please go to Cindy's website for more information. www.reachingbeyondtheclouds.com
See below for more on her amazing story:
Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest
On August 1st 2007 , I was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , I summited Mt. Everest . With a rare and potentially life-threatening disease, at the age 51, and functionally blind in one eye: I joined an elite group of American females who have climbed the world’s tallest mountain. My journey to Mt. Everest began three years ago but my story, like so many other victims of rare unknown diseases, started more than a decade earlier.
At the age of 48 and with no mountaineering experience, I decided to climb Mt. Everest. A few months later I lost most of my vision in one eye and was diagnosed with a very rare potentially fatal disease, but I would not give up my dream to climb Everest. After 2.5 years of training, medical set-backs, and personal sacrifice; I became one of the 157 non-Sherpa people to summit the South Side of Mt. Everest in 2010.
About 3000 individuals have summited Mt. Everest and of those only 250 were female. Only about 400 Americans have summited Everest and of those about 40 were female.
There are 30 million Americans with rare diseases and on international level there is no scale to measure to numbers affected. Before my climb I became an advocate to raise rare disease awareness for the National Organization of Rare Disorders (NORD) and the Vasculitis Foundation (VF). After 54 days of working my way up the mountain, I stood at the top of the world holding a NORD Banner.
Cindy Abbott's Book - Reaching Beyond The Clouds
Click Here to Buy Cindy's Book
Conference Sponsorship:
Please take a moment to view our "Corporate Philanthropy" deck. There are many opportunities with varied donation levels. It is our hope that we can find individuals or companies to sponsor our upcoming conference. Please contact Jen Wyman at jenniwyman@att.net with further questions or interest in sponsorship.
2011 CRN Family Conference - Sponsor Levels
Pre-registration documents:
Cover Letter
Hotel Registration and Conference Costs
Creative Ways
2011 CRN Family Conference - Scholarship Description
2011 CRN Family Conference - Scholarship Application
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