I love my jeans! Joe's Jeans and Seven for all Mankind are my favorites. These brands are expensive, but I love the fit, and I'm not above scouring discount stores and consignment shops to find them at a good deal. When I find a pair at a discount, I snatch them up and feel like it's Christmas!
Recently, I've developed a whole new appreciation for my jeans -- and for my genes.
In the U.S. alone, through no fault of their own, more than 30 million Americans suffer from rare diseases with often unpronounceable names, including Ataxia Telangiectasia, Qazi Markouizos Syndrome and Faciocardiomelic Dysplasia. More than 22 million of those are infants and children and the number of people afflicted by rare diseases is dramatically increasing in our country. The physical and emotional challenges they face are often compounded by the isolation and confusion that stems from too little information about their conditions and what resources may be available to them. Some of these diseases have been brought to public attention through the efforts of celebrities like Julia Roberts, who advocates for research and solutions for Rhett Syndrome, and Tom Hanks, who acts as spokesman for Neuroblastoma, a rare cancerous tumor that affects the nervous system of children and infants. But while their efforts certainly do help, it is difficult to generate the medical and financial attention needed to productively address rare diseases on a national scale when such a small number of people are afflicted by each individual disease.
Several noble nonprofits are working to change this by creating national umbrella organizations that offer funding, community and awareness for individuals and families suffering from rare diseases. By joining forces and encouraging nonprofits working in the rare disease space to collaborate, they are becoming much more effective in increasing awareness and the corresponding large-scale fundraising needed to create real change in the medical field. New Web sites are springing up, providing a central location where families can find a community and learn about the resources available to help them cope and help ease suffering.
This is Global Rare Disease week. Visit the Children's Rare Disease Network's Web site to learn more about the diseases that now afflict 10 percent of the U.S. population. And wear your favorite jeans to show your support on Sunday, Feb. 28, 2010, Global Rare Disease Day. Visit CRDN's Global Genes Project Web site to learn more.
You can also help by donating your used video games and game systems to Donate Games. One hundred percent of revenues raised are donated to help support research and families suffering from the more 7,000 rare diseases.
And of course, every time you save money with CommonKindness by using our online coupons and discount codes you can help support these and other great nonprofit organizations. You save and CommonKindness donates to your favorite charities and causes -- at no cost to you.