By CARINE NADEL
Freedom News Service
Some diseases are so rare theyíve been put into a class called orphan diseases.
Orphan diseases donít affect enough people to attract a lot of support or fundraisers from organizations such as the American Cancer Society. And drug companies rarely research cures for these ailments, which affect more than 20 million Americans.
The Carol family knows the problem firsthand. In 2006, their son Taylor was diagnosed with a rare form of leukemia. Jim and Cynthia Carol left their Southern California home to spend more than a year at the Seattle Ronald McDonald House while Taylor underwent a bone-marrow transplant. The Carols returned in 2008. Taylor, now 14, is cancer-free.
Raising funds for research into orphan diseases became a personal mission for the family, which includes son Brandon, 21, and daughter, Alyssa, 9. The Carols founded DonateGames.org, a non-profit organization that accepts donated video games and resells them to raise money for research. Jim Carol talks about their program.
†Q. What exactly is Donate Games?
A. My son is really into gaming. During all those long months in the hospital, he was separated from his friends, his siblings, family. All he had was his video games. They saw him through a lot of very lonely hours.
This was our way of making sense of it all and doing something for other kids and families with orphan diseases. Itís a simple thing, really. Once youíre bored with a video game, send it to Donate Games, which automatically issues you a donation receipt for your taxes. We sell the game to raise money for research. We have our Web site up and running to purchase games off the site.
Everyone who runs the charity is a volunteer. Many game publishers, such as EA, Paradox Interactive and Telltale Games, have joined us to help the cause. We just received a huge donation of over 750 pounds of video games. Theyíve come from all over the world: Kabul, Dubai, Canada and Kansas. We are truly busting at the seams.
†Q. How do you decide which diseases receive what amounts of money?
†A. One of our volunteers, Dr. Jesus Valadez, heads our science committee. He and his team do their part to distinguish which diseases are close enough to cures that a donation from us will put them over the top. Some of the top ones right now are chordoma, a brain cancer; Rett syndrome, a neurological disease that mainly hits young girls; and progeria, the premature aging disease.
Q. How do prices compare with those of major retailers?
A. Our goal is to sell the games; the more we sell, the more funds we have to distribute. So, while we canít compete with things sold on eBay and such, we will meet the price of any major retailer. And when you buy from our Web store, youíre doing a lot of good! One of our partners, Neudesic Corp. in Irvine, Calif., created a ďprice fighterĒ program we are using, so we know weíre always matching the lowest prices out there.
We have so many games right now that our next goal is to find a storefront and open up an actual physical site.
†Q. What is your biggest goal for the future?
†A. We want to be a long-lasting legacy. Last year there were over $2 billion worth of games sold. Gamers are a huge community. We want to see this grow and fund as many research projects as possible.
Q. Could you clarify one point: Your mission statement says that you want to help research orphan diseases here in the U.S. But youíve been receiving quite a bit of donations from all over the world. Who will be getting the bulk of the funds?
A. Iíve learned one thing as an entrepreneur: Things are always changing. Our statement is that we intend to fund research here in the United States. But if a facility outside the U.S. is closer to finding the cure, then it makes sense to help them. Thatís what our scientific committee is for.
The idea of Donate Games is to help researchers find cures for these neglected and rare diseases. If we help that take place, then we have done what we set out to do.
Q. This all started due to your own sonís love of video games and his orphan illness. What does he think of what you started? Does he lend a hand, and how is he doing now?
A. Taylorís doing great and he helps all the time. Itís given him, his brother and sister and his friends a sense of what a great thing volunteerism is and what it means to others. He loves what weíve created.
Q. Anything youíd like everyone to know?
A. We are blown away by how fast our idea is growing. We havenít even been established for a year. Weíre here for the long haul. The support from the gaming community has been unbelievable. As hard as it is to fathom, weíre all better for this experience.
How to Donate
Have games you arenít playing anymore? Feel like you arenít getting enough for your trade-ins? Then, consider using your games to save lives. Itís easy! Just drop your game(s) into a padded envelope and mail to:
34145 Pacific Coast Highway
Dana Point, CA 92629-2808
Include your e-mail and return address and you will receive a receipt for your tax-deductible donation. Visit their Web site at DonateGames.org