As you may have noticed the banner are the top of the page there is officially an International Fanconi Anemia Day. It is on Elias birthday, May 1st, how appropriate! This will be an annual event that we have visions and intentions to grow into something very worthy of patients. It is difficult to raise awareness for a rare disease of any kind, but when the community of patients numbers at about 1,000 that is very rare. A rare disease is recognized as any disease affecting less than 200,000. We are obviously very far from that number. The effort begins at the grass-roots with family and friends and spreads from their. There is a Facebook group available as well as Twitter in addition to the website.
Here is an easy way to help us spread awareness. There are two T-shirt designs available here to purchase. If you order by this Thursday April 1, 2010 you should have them by May 1st. The proceeds from the shirts go to the Fanconi Anemia Research Fund. Please help out by buying one for yourselves and encouraging friends, coworkers, churches etc to order as well and visit the International Fanconi Anemia Day website as well. We also will be doing a friends and family challenge that week to help raise money for research so that we can cure this disease. Sadly two more children lost their lives in the past two weeks. It is a somber reminder of what we have to do to help the others. Thanks so much for supporting the efforts. Katharine and I are working hard on this with many others to make this a successful first year and we already have some awesome plans to help make next years event even more awesome!