Ataxia-telangiectasia: Giving Hope
Patient Stories of Hope and Inspiration ‘Meet Cayenne’ My niece Cayenne has A-T (Ataxia-telangiectasia), a rare childhood, progressive and degenerative disease that affects a variety of the body’s systems. After a year of testing, Cayenne was finally diagnosed when she was almost three. Her main symptom of A-T was her wobbly walk – she was [...]
AT Children's Project inspiring it's community to 'Get Involved' this World Rare Disease Day!
Today, AT Children’s Project promoted to it’s community what they have created to support World Rare Disease Day, and the benefit to their community. ATCP has created a plan that can be mirrored by other rare disease organizations as well. They have created a platform based on the Global Genes Project that will make it easy for their [...]
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]
AT Children's Project Takes To The Seas – 'Transat Sail Race' creating greater awareness for Rare Disease
Rémi Aubrun, a sailmaker, innovator, and skipper, departed France on September 13, 2009 in a sailing race called the “Transat” in honor of Caroline Corre who has A-T. The proceeds from his sponsorships will benefit the A-T Children’s Project. The Transat 6.50, previously known as Mini Transat, is a grueling, transatlantic solo race of 4,200 [...]