When I learned that Rare Disease affect 10 times more people than breast cancer I was shocked
Albany, CA and Laguna Woods, CA (PRWEB) February 18, 2009
Students at Albany High School in Albany, California, are asking classmates, teachers and parents if they can spare some change to help support the first annual World Rare Disease Day, an international event being held February 28, 2009. About 1 in 10 American's, or 30 million people in the United States, suffer from what is termed Rare Disease with about 75 percent of cases afflicting children. The goal of World Rare Disease Day 2009 is to raise global awareness of Rare Disease with policy makers and the public and educate people on how rare disease impacts patients and families.
The fundraising effort organized at Albany High School mirrors similar drives at schools and businesses around the country. The students at Albany High School formed the Red Bucket Club to support The Project: The Children's Rare Disease Network (http://www.theprojectcharity.org), a Laguna Woods, Calif.-based nonprofit organization that seeks to connect families with children afflicted by Rare Disease with information, resources and a platform for communication and collaboration.
"There's nothing rare about Rare Disease," said Nicole Boice, founder and CEO of The Project - The Children's Rare Disease Network. "Rare Disease is touching millions of people around the world and together we must start to make Rare Disease a global public health priority."
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity.
Approximately 7000 rare diseases have been identified often having deadly consequences or leaving children with severe cognitive impairment and physical disabilities. Because specific diseases may afflict few individuals, they often don't garner the attention of researchers and pharmaceutical companies. But rare diseases do share many commonalities -- from similar symptoms to quality of life issues surrounding raising a child with a rare disease to financial hardship faced by families.
Red Buckets Spare Change Campaign
The week leading up to World Rare Disease Day 2009, Julian Levine and fellow students at Albany High School will carry red buckets donated by Pastime Hardware in El Cerrito, Calif., to collect spare change from classmates. The spare change collected will be donated to The Project - The Children's Rare Disease Network to help with special programs being developed for the families of children with Rare Disease.
"When I learned that Rare Disease affect 10 times more people than breast cancer I was shocked," said Julian Levine, a freshman at Albany High School and organizer of the Red Bucket spare change collection event. "I didn't understand why Rare Disease hasn't received much attention and I felt I could do something to help. My goal is to create greater public awareness related to children suffering from rare disease, its prevalence, and the hope that they can help make a difference. The change collected will be donated to The Project - The Children's Rare Disease Network to help with special programs being developed for the families of children with Rare Disease.
In addition to the efforts at Albany High School, a number of other organizations and kids across the country have committed to help raise funds or create awareness surrounding World Rare Disease Day 2009 efforts including; Lamar Advertising in PA; Presbyterian Center for Children, WI; Learning Express, Reno, NV; St. John's Episcopal School, CA; St. Mary All Angels, CA; Don Juan Avila School, CA; Smoothie King, CA; Kathleen McTeague Dartez Challenge for Jouberts Syndrome, MD; University of Scranton, PA; Brigham Young University, UT; CureDuchenne, CA. The hope is that this year will become the catalyst for schools, businesses and individuals across the country to join the cause to build a broad national effort for World Rare Disease Day 2010.
About The Project - The Children's Rare Disease Network
The Project - The Children's Rare Disease Network is a non-profit organization that assists in the fight against children's rare disease. The mission and the promise of The Project is to build a collaborative communication environment providing connections between patients, physicians and the scientific community. The Project will aggregate current information and efforts related to rare disease into a seamless portal, enabling all of those affected by rare disease, to easily receive the support and resources they need. The network will also work to create greater public awareness related to children's rare disease and its impact on society. For more information regarding The Project's efforts, to make a donation, or contact one of the team please visit http://www.theprojectcharity.org.
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