How exciting this week has become. We are proud to be affiliated with children across the country working to create greater public awareness for rare disease! Jackson Watkins, a 6th grader from Southern California, spoke to his entire school about World Rare Disease Day 2009 efforts. His school is participating in ‘Change for Change’, a spare change collection campaign created by kids wanting to help make a difference. Jackson did a phenomenal job, and impressed not only his friends but the school’s administration as well. He articulated the need to better understand the prevalence of rare disease and that rare disease affects 1 in 10 Americans worldwide.
Learning Express, a specialty toy store located in Reno, Nevada, is offering a day full of fun filled events at the store to raise money for children affected by rare disease. This week, children and families with rare disease such as Niemann Pick Type C and Fragile X were interviewed by KRNV Channel 4.
The Reno based television station plans to promote the Learning Express fundraiser for Rare Disease all week. All proceeds from the event will go to The Project Charity — The Children’s Rare Disease Network.
Stay tuned for more stories throughout the week. It is amazing what we can do when we come together for a common cause! Thanks to everyone for their support and efforts! Let’s keep World Rare Disease Day 2009 momentum going!