Issue: # 45
December 2014 
In This Issue

       Don't miss this opportunity to help the DBA Foundation secure $10,000

Recently, a great grandmother of a DBA child died and her family has chosen to continue her legacy of giving and generosity by offering the following challenge.

For every new donor that commits to a monthly donation, the family will donate an additional $500 up to $10,000.  Many families and friends support our mission with a $20, $50, $100 or $200+ monthly gift.  Automatic monthly donations can be set up through PayPal or credit cards on our website (, through your banking institution, or a check can be mailed to the DBAF on the 1st or 15th of every month. It's easy and very much appreciated!

The DBAF is grateful to this very special family for their generosity and lasting tribute to a beautiful woman. We hope you will accept this challenge! Please consider partnering with us and become a monthly supporter. Sign up today.

For more information, please contact Dawn Baumgardner at 716.674.2818


Make a difference  

Upcoming Events

Friends of DBA 

Night at the Races
February 20, 2015
Weymouth Country Club
Medina, OH
Jim & Carol Mancuso

In Honor of Audrey
March 14, 2015
St. Edward Parish and School
Jeffersontown, KY
More information: 
Coming Soon 

Ongoing Fundraisers
Family Letter Writing Campaign  
Pre-printed letters and envelopes have been created for you to send to your contacts! Call or email for more information.
Dawn Baumgardner


Wristbands Available 
Twila Edwards




Tribute Cards Available
(3 Styles)
In honor of...
In memory of...
Holiday giving...
Dawn Baumgardner 
  donation donation
5" x 5" Stickers Available
Dawn Baumgardner 
  window sticker


7" x 5" Decals Available
David Voltz
Cure DBA decal_Voltz.  
Cookbooks Available  
Betty Lightner  
To order online, visit:
cookbook cover  


AmazonSmile Program
You Shop... Amazon Gives!
If you shop on Amazon, please log in using, select Diamond Blackfan Anemia Foundation as your charity, and shop as usual. Amazon will donate .05% of your purchase to the DBAF.
Good Search/Good Shop  
Raise money for DBAF 
just by searching the web and shopping online!   


Quick Links
The Diamond Blackfan Anemia Foundation (DBAF) is committed to keeping you updated and connected to the entire DBA community. The DBA Foundation is YOUR Foundation!  We encourage you to share your ideas, photos, and stories for our website and upcoming newsletters.  Contact us at
Going Strong
As 2014 comes to a close, the Diamond Blackfan Anemia Foundation (DBAF) is grateful to the many families, friends and beneficiaries that have supported our efforts over the past 20 years! We have remained committed to our mission and with your help, we will continue to provide support for DBA patients, families and research.

This past year, the DBAF adopted this updated mission statement:

The mission of the Diamond Blackfan Anemia Foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

 In 2014, the DBAF has provided vital funds for five research projects totaling $244,281 that aim to better understand, treat, and cure Diamond Blackfan Anemia. We are proud that many of the grants we have awarded have yielded a great return on our investment. Each approved project will give us one more piece of the intriguing DBA puzzle, while also attracting and keeping researchers interested and vying for larger grants for Diamond Blackfan Anemia research.

Please partner with us as we continue our global efforts to improve the lives and futures of people and families afflicted with DBA.  In addition to the research projects, the DBAF hosted the premier 2014 DBA International Consensus Conference (ICC) and plans for a 2015 Family Meeting and the 2016 ICC are underway.

Your support is needed to help continue our efforts until better treatment options and a cure are found. Your gift brings us closer to that goal.  Please consider a one-time significant gift or become a monthly donor to support DBA research all year long. You can help us work towards a cure. (Please see the related article, "Take the Challenge" in this newsletter.)

Your donation and involvement are sincerely appreciated. Please visit our website for giving options. 

ABLE Act is now law
On December 19, 2014 President Barack Obama signed the ABLE (Achieving a Better Life Experience) Act into law. The law is designed to allow people with disabilities to save money to finance long-term needs without jeopardizing their benefits.To learn more from the National Disability Institute, visit,
To read the bill, visit

WANTED: Amazon Shoppers
Give While Shopping

The Diamond Blackfan Anemia Foundation is participating in the AmazonSmile program. AmazonSmile offers the same wide selection of products, low prices, and convenient shopping features as The important difference is that when customers shop through AmazonSmile (, the AmazonSmile Foundation donates 0.5% of the price of eligible purchases to the charity of your choice!
It simple to do and will not add to the price of your purchase. Visit, select Diamond Blackfan Anemia Foundation as your charity, and let the shopping begin! You can use your existing Amazon account on AmazonSmile. Once you select the Diamond Blackfan Anemia Foundation as your charity, all your shopping visits will benefit the DBAF! It's free and easy. Start your Amazon shopping on AmazonSmile today! 
Where Are You ?
Help Us Keep in Touch

Did you move? Need to add a new address, phone number, email address? Are you a recently diagnosed family?

Please help us keep our records current! Take a moment to visit our website and fill out the registration form. Patient/Family Registration Form 

Help us to reach all our families.
If you are aware of other DBA families in your area, please encourage them to contact the DBA Foundation.

Please note that the Diamond Blackfan Anemia Registry (DBAR) and the Diamond Blackfan Anemia Foundation (DBAF), are not allowed to share your personal information.  It is necessary to register with both the DBAR and the DBAF.

If you have any questions, or to check on the status of your information, contact Dawn at 716.674.2818 or 

Show Us Your Logo

2015 is a Camp Sunshine year and we thank our friends at Camp Sunshine for their warm welcome!  Stay tuned for more information!

Camp bannerHere's the challenge: 

We would like to see how many places we can show off our logo!

logoSnap a picture sporting our logo and send us your story. Draw it, print it out, wear it, wave it, tattoo it, carve it, stick it... be creative! Take us to school, on vacation, to the hospital, on a plane, to the game, in your home... anywhere!  Show us your logo!  Send your photos and stories to

Journal Club

Trend - a general direction in which something is developing or changing

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director

Before bidding adieu to the year past and benvenuto to the year ahead, I thought I would use this end-of-year article to mention what I have perceived as five trends in the DBA-related sciences in 2014.

1) Increased globalization - Last spring many clinical and basic science researchers met in Atlanta for the 13th Diamond Blackfan International Consensus Conference.  This conference has been a forum for clinicians and researchers (predominantly, but not exclusively) from the US, Canada, and Europe to get together to discuss their latest findings and build collaborations that have led to significant advances in the DBA field over the years.  The DBA community increased its global reach with the EuroDBA conference held in Freiburg, Germany in September where representatives from 26 countries (including many countries from the Middle and Far East) came together to share challenges and successes in dealing with DBA in different cultures.  It is clear from these meetings that there is much to learn from one another and that by pooling resources as the DBA global community continues to grow, further advances can be made to improve the lives of individuals affected by DBA.

2) Focus on iron - While iron overload has always been a major cause of morbidity and mortality in DBA and other transfusion dependent patients, the past couple of years have marked a watershed in terms of the number of studies that have been published comparing and contrasting iron overload in DBA relative to other transfusion dependent patient populations. Considerable evidence is mounting that DBA patients load iron in ways that are distinct from, and more deadly, than other patient populations receiving similar transfusion burdens. This increased awareness has led to calls for more forceful efforts to strengthen patient compliance with chelation therapy. Further, as more and more is learned about the molecular basis for the differences in iron loading in DBA patients, more effective disease-specific strategies may be devised to address this critical problem.

3) From gene to genome - From 1999 when the first DBA gene was identified to 2014 when several additional genes were added to the still growing list of DBA genes, we've gone from sequencing individual genes to sequencing the expressed regions for virtually all genes in the human genome (termed whole exome) in DBA patients.  This approach has led to the discovery of additional ribosomal protein genes affected in DBA and to the first non-ribosomal protein gene, GATA1 (published in 2012).  

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Please make sure you "like" us on Facebook and then help spread DBA awareneness by sharing our page and asking your friends to like us, too!

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