Issue: # 46
January 2015 
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
Grant awarded to Nicholas Watkins, Ph.D.

The Diamond Blackfan Anemia Foundation (DBAF), in collaboration with DBA-UK, is pleased to announce funding for a project entitled, "Ribosome biogenesis, cellular signaling pathways and Diamond Blackfan anemia."

A $41,810 grant was awarded to Nicholas James Watkins, Ph.D, a senior

Dr. Nicholas Watkins & Ph.D. Students

lecturer in the Institute for Cellular and Molecular Biosciences at the University of Newcastle upon Tyne in the United Kingdom.

Dr. Watkins has had a longstanding interest in ribosome biogenesis and has recently published an important paper on the role of the 5S RNP (a complex of 5S rRNA with RPL5 and RPL11) in activating p53 in response to defects in ribosome synthesis in the journal, Cell Reports 5:237-247 (2013). This signaling pathway has been on the forefront of DBA research for several years.  Dr. Watkins' laboratory has recently identified two regulators of the 5S RNP signaling complex that could represent potential targets for the development of new drugs to treat DBA.

Dr. Watkins stated, "We are grateful to the DBA Foundation and DBA-UK for supporting this project. Our laboratory has a long-standing interest in the production of human ribosomes and for a few years now we have been interested in uncovering the mechanism leading to genetic diseases such as DBA. The money will support the Ph.D. students in the lab who are studying the regulation of the tumor suppressor p53 in response to defects in ribosome production."

The DBAF appreciates Dr. Watkins hard work and interest in DBA and is grateful to DBA-UK for their willingness to help fund this important project. The work in the Watkins laboratory adds to the growing number of research studies supported by the DBA Foundation focused on translating laboratory results to improvements in care for DBA patients.


DBAF Supports Ribosome Meeting

The Diamond Blackfan Anemia Foundation (DBAF) is proud to support the Ribosome Synthesis Meeting held tri-annually. This international meeting, celebrating its 10th anniversary, brings together investigators from all over the world to focus on issues related to ribosome synthesis. The 2015 EMBO Conference on Ribosome Assembly will be held at the Hotel Metropole in downtown Brussels from August 19-23, 2015.

The meeting will focus on the mechanisms of ribosome assembly in eukaryotes and prokaryotes, the molecular basis for ribosomopathies, the role of specialized ribosomes. We are pleased that several of "our DBA docs" will be in attendance and serve as session chairs.

Your Donations at Work
Please Support the DBAF's Mission
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.  
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

Many thanks to Charlie & Debbie Brown of Virginia for hosting a recent fundraiser to benefit the Diamond Blackfan Anemia Foundation in honor of their daughter, Caitlyn Rose. These t-shirts are available for a very limited time and proceeds will directly benefit the DBAF. To order your shirt, please  CLICK HERE. 

Here'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

"Nature makes penicillin, I just found it; one sometimes finds what one is not looking for" ~ Alexander Fleming

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director

One could describe Fleming's discovery of penicillin as one of serendipity.  The roots of the word serendipity can be traced back to1754 and Horace Walpole
[1].  The origins of Walpole's new word could be further traced back to a Persian fairytale concerning the three princes of Serindip who traveled the world making discoveries of things they were not in quest of, via accident and sagacity.

A current definition of serendipity from states: serendipity - the faculty of making fortunate discoveries by accident.  But accident alone doth not necessarily a discovery make.  In describing the three princes approach to discovery, accident was coupled with sagacity (mental discernment); or the ability to recognize an important discovery even when it is not the object one set off to find.

Or as Louis Pasteur put it: "Chance (or a serendipitous discovery) favors the prepared mind."

And so it goes for Sotatercept, a drug initially developed for the treatment of osteoporosis that had the unexpected side effect of increasing hematocrit and hemoglobin levels.  While this side effect reduced enthusiasm for the development of Sotatercept as a treatment for osteoporosis, it soon morphed into a potential treatment for various forms of anemia.

In fact, Sotatercept is currently undergoing a clinical trial for its efficacy in adult patients with DBA (  While the trial in DBA patients is still in its early stages, new data on Sotatercept is emerging from preclinical studies in animal models of β-thalassemia that I thought would be worth discussing in this venue.

Like Us and Follow Us
window sticker
Social Media is a great way to get our message out and keep us connected.

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!

You can also find us on Twitter.  Follow us here: