Well, it's been awhile hasn't it! I have no excuses except that summer flew by, we had lots of fun, and now fall is here! And I WILL get back to this blog again, but will have to figure out a way to avoid posting 20 posts at one time! Perhaps a top 10 of the year, haha! In the meantime, I am exhausting all avenues to let you know about something VERY important to us. As you know, Bailey has Diamond-Blackfan Anemia. She has been doing great with her steroid treatment, but the reality is that our thoughts are never far from the fact that she takes medicine to stay alive. That about a 1/4 of DBA patients don't respond to steroids like she does and are therefore dependent upon blood transfusions. Sadly, our "DBA family", comprised of families of those with DBA that stay in touch (since we are a small community affected by this rare disease), lost 21 individuals in the past 24 months. This is too many lost lives! Please take the time to read below. AND PLEASE feel free to spread the word, via any way you like (emails, Facebook, blogs, letters, flyers), in fact, I beg you to! Thanks for your support and love!
Bailey at Johns Hopkins after 4 blood transfusions, age 6 months,
the weekend her DBA journey began, Jan 2009
The DBA Foundation has qualified for a unique and exciting opportunity! We are competing in the Chase Community Giving Program and have a chance to win between $10,000 - $250,000! Over $5 million will be awarded to the top 196 charities receiving the most votes during September 6-19. This amount of money would have a huge impact on our organization and the research we could fund!
Here’s what you can do to help! Facebook users and Chase customers are eligible to vote. Facebook users that are Chase customers can vote twice. We are asking you for your personal vote and then to take it one step further! Our “DBA Family” is very small, so we need the help of our families, friends, contacts, and communities to help us spread the word. Please VOTE and then consider SHARING this exciting news via email and Facebook by forwarding it to your contacts.
Here is how you can cast your important and meaningful vote.
Chase customers, please vote here:
Facebook users, please vote here:
Facebook users that are Chase customers, please do both
To make it easy, the DBAF has created a sample e-mail (available here)and a sample press release (available here). Please feel free to use them as a template and to add your own personal information and experiences.
We are committed to making a difference. Please know that your vote(s) and your willingness to help us are truly appreciated. We sincerely thank you for your time, consideration and your vote. Thank you for caring and sharing.
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