Sunday, April 25, 2010

In Honor of Elias! Upcoming Birthday

fa ribbon As many of you already know our son Elias has Fanconi Anemia, a very rare disease that has less than 3,000 patients worldwide. It often leads to bone marrow failure or leukemia requiring a dangerous bone marrow transplant for survival in addition to many other cancers, all at a very early age. Sadly, many patients do not reach adulthood. However, dedicated research has improved outcomes for transplants and is increasing the lifespan by a few years. Fanconi Anemia research has also been pivotal in creating pathways for other cancers and diseases making contributions, most notably to breast, ovarian & pancreatic cancer research. Findings like these make Fanconi Anemia’s research not only valuable to it’s affected patients, but the world’s general population. Just one week ago researchers discovered a 14th FA gene, RAD51C, which is yet another FA gene also linked to breast cancer. You can read more about it on the FA Day Site. On May 1, 2010 (Elias birthday!) the very first International Fanconi Anemia Day will take place. We have been involved on a very intense level towards making this a reality. We are asking for your help in supporting this effort. In honor of Elias! second birthday please join us with a $10 donation to the Fanconi Anemia Research Fund. If you can give more it would be greatly appreciated! We also request that you with your friends and family asking them to do the same. Rare diseases such as this do not get as many donations, yet its research is impacting millions outside the affected population. What better opportunity to have a hand in the cure than this one? Will you accept our challenge to donate and pass this along?


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We appreciate you reading and following Elias' journey.