A Request for Elias!

One of the most common things commented to us about Elias is his smile. Lord only knows how this child that has endured so much and will continue to be challenged with manages to keep a smile on his face 99% of the time. Well here are two opportunities to help keep Elias smiling.

The first is for our Facebook followers. Chase community giving has begun it's yearly voting contest. The first round goes until May 4, 2011. It takes 2 seconds to follow this link & follow the directions to Vote for the Fanconi Anemia Research Fund. You are going to want to see this because Elias photo is the one EVERYONE sees. One look at his adorable face and he will capture your heart! We know, we see it happen  a lot! The top 100 organizations $25,000 and continue on to another round. That is $25,000 for research that just might one day provide a cure for Elias and others with FA. There is a lot of groups and the only way we have a chance is to capture every opportunity. So please after you vote won't you please share this with your friends.

Speaking of friends, here is the second opportunity to help Elias smile more! In celebration of International Fanconi Anemia Day which is May 1st (also Elias! 3rd birthday) we want to remind you all of the online donation challenge. You all know 10 people right? Each of them know 10 people. That is 100 potential donors just like that and $10 is all you are asking. 100 people @ $10 is $1,000. Follow the math and see that 100 of us initiate this challenge and pushing it we would bring in $100 thousand dollars for research. The beauty of this is that we all know more than 10 people. A huge thank you to all who have already donated.

Remember, Fanconi Anemia research is not only helping patients with FA, but it is positively impacting various cancer research as well. Breast, prostate, ovarian, & head and neck cancers are among them. Without FA research some of the advances in their research may not yet have been discovered or more slowly developed. So fanconi anemia research has the potential to reach and help millions in the general population. We thank you for your support with Elias! as well as these two activities.

The Need for a Cure!

This has been a rough weekend mentally. As you saw from the site announcement another FA child has gone to heaven. 6 year old Ashlynn was such a fighter. Her bone marrow transplant and the medications that go with it really took their toll on her organs, particularly her lungs. She passed away on Saturday afternoon, according to her mother’s facebook posting, in her arms around 1 pm. She just had a trach placed on Thursday in hopes that it might help her overcome the lung issues while on the ventilator. We reached out to her parents offering support and help since we had been down the trach and then the ventilator path with Elias. It was sad to hear and really created a somber mood for the weekend. It is such a senseless pity that these children have to suffer as they do, but they all do it with such warm loving and inspiring spirits.

Last weekend was a Pink for Bravery Day in honor of a family in the United Kingdom who was celebrating the life of their daughter they had lost a few years ago from FA. It began as something they just did among themselves, but this year it spread to the rest of the FAmily. All day on facebook people were sending photos to this family of them dressed in Pink. It was touching to see, we can only imagine how the family felt. There may only be a few of us families in the world with FA, but it is probably one of the most caring and supportive group of individuals, most of whom we have never met, brought together by an unfortunate disease. Which FYI in case you missed it we got an official tally on the first International Fanconi Anemia Day, $135,000 raised for research! That is quite an effort for a first year. It is going to take efforts like that though to beat FA! The past few weekends have been a somber reminder of how important it is to support research for FA. Our scientist and doctors have made incredible strides, but there is still so much yet to learn.

Thanks for taking the time to listen to us about this. We try not to dwell on the life-threatening side, but when it slaps you in the face with each passing child and adult it is difficult to ignore. It is day like these where we hold each other close and thank God for the days he has given us and try to above all else be true to being a family full of love, hope, and each other.

International Fanconi Anemia Day

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!