Issue: # 34
November 2013 
In This Issue
It's Holiday Time
Congratulations Dr. Flygare!
DBA Fact #12
Support the ICC!
Show Us Your Logo
Journal Club
We're at ASH
Like Us and Follow Us

It's Holiday Time...
DBA Style 
We are grateful to two very special families for bringing attention to the Diamond Blackfan Anemia Foundation during the hustle and bustle of the upcoming holiday season.


Please consider supporting their fundraisers while raising awareness of Diamond Blackfan Anemia and raising funds to help the DBAF continue supporting DBA patients, families, and research. As always, thank you for your continued commitment and support.


   ornaments 13


The Dear Santa and Balloons ornaments  (both are available in brass or silver) will reflect the twinkling lights of the season and the sentiments of our hearts. The dazzling ornaments make great gifts and will add some sparkle to anyone's tree!


They are available for a minimum donation of $10.00 plus shipping. 


Please contact Tina Singhas, mom to 3 year old Mackenzie, at to place your order or for more information.
Holiday cards.
Watermark for display only
You, along with your family and friends, can wish everyone on your lists "Happy Holidays" with this beautifully crafted card. Graphic designer, Lauren Pooley, describes her design as "an ornament shaped like a blood drop, with the fans and diamonds together representing the whole organization." 

The cards will be available in packs of 10 for a minimum donation of $10.00 per pack. For more information, please email Angela Isola, mom to 3 year old Matteo, at

There are limited quantities of all items, so order your cards and ornaments today! 


Thank you Singhas and Isola families for spreading some DBA cheer and supporting our mission!
Upcoming Events


DBA Craft/Bake Sale, Silent Auction & Blood Drive
October 25, 2013
Lillian Schumacher Elementary School
Liberty, MO 
Lea Ann Soto

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" Decals 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  


Good Search/Good Shop  
Raise money for DBAF 
just by searching the web and shopping online!   


Quick Links

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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
Congratulations Dr. Johan Flygare!
DBAF grant recipient receives prestigious awardJohan Flygare 2

We are so proud of Dr. Johan Flygare and bursting with excitement and gratitude! The DBAF has enthusiastically funded numerous of his earlier DBA research projects and this young researcher's hard work and dedication have been rewarded!  The Ragnar Söderberg Foundation announced the Ragnar Söderberg Fellow in Medicine 2013. Johan Flygare was one of the six scientists who received the grant, 8 million SEK over 5 years (that's the Swedish equivalent to $1,218,640.00 US dollars!), which will enable him to continue his important work.

Dr. Flygare stated, "The support from the DBA Foundation has really been essential for my career! First, DBAF allowed me to stay on in Stefan Karlsson's lab (Lund University, Sweden) for 6 months after my PhD to generate the DBA mouse model that we now use in many of our experiments. Next, funding from DBAF allowed me to hire Violeta Rayon Estrada (now a PhD student at Rockefeller) as my technical assistant during my postdoc in Harvey Lodish's lab (Whitehead Institute, MIT). Working with Violeta has been  great fun and essential for my postdoc work. In 2011, funding from DBAF helped me establish my own research group back at Lund University, Sweden. Thank you so much!"


CONTINUE READING ARTICLE HERE.  (website article also includes a link to a video clip)


Our Facebook Page and website post DBA Facts submitted by DBA nurse, Ellen Muir, RN, MSN, CPON. We are pleased to share these facts with our patients and families. Special thanks to Dr. Adrianna Vlachos for her continuous direction and input.

It is generally safe to vaccinate DBA patients. Most DBA patients have normal immune systems. Therefore, they should undergo a standard regimen of childhood immunizations. For DBA patients who present with anemia before 6 months of age, the most recommended practice is to treat anemia with monthly transfusions. Steroid therapy is usually delayed until 1 year of age, if possible. Children can therefore safely receive all the early immunizations without any interruption.  When the patient is initially diagnosed with DBA, it is generally recommended that the patient is on transfusion therapy. It is advised to give the 12-month live vaccines (Varicella [chicken pox] and MMR [Measles, Mumps and Rubella]) and then proceed to start the steroid trial at least 2 weeks after these vaccines are administered. It is also recommended that DBA patients receive the yearly Influenza (flu) vaccine.

For patients who start corticosteroid therapy (usually Prednisone or Prednisolone) before 12 month of age, it is generally safe to give  the "killed" vaccinations. The only downfall is that the patients may not get the full "effect" of the vaccine because the steroids can dampen the immune response to the vaccine.

The Red Book 2012 (The Infectious Disease Guidelines of the American Society of Pediatrics) states the following: 

"Children who receive systemic corticosteroid therapy can become immunocompromised. The minimal amount of systemic corticosteroids and duration of administration sufficient to cause immunosuppression in an otherwise healthy child are not well defined. A dosage equivalent to ≥2 mg/kg per day of prednisone or equivalent to a total of ≥20 mg/day for children who weigh more than 10 kg, particularly when given for more than 14 days, is considered sufficient to raise concern about the safety of immunization with attenuated live-virus vaccines.

Accordingly, guidelines for administration of attenuated live-virus vaccines to recipients of corticosteroids are as follows:  


Support  Progress... Support the ICC!!
In March 2014, the Diamond Blackfan Anemia Foundation will sponsor the 13th Annual DBA International Consensus Conference (ICC). This is THE premier DBA scientific/research meeting that was founded and previously hosted by the Daniella Maria Arturi Foundation. The DBAF is proud to continue this very important meeting and we are currently looking for sponsors to help offset the cost of the meeting.  If you, your company, or an interested party is willing to invest in the success of the ICC, please contact Dawn at for more information. Your support is appreciated!. 
Show Us Your Logo

Going once...going twice... get your's today! A very limited number of DBA cookbooks are available and when they're gone.. they're gone!

Bailey & Friend with cookbookMany thanks to Betty Lightner, mom to 5 year old Bailey, for organizing and managing this fundraiser. Her hard work, along with the help and cooperation of many of our families, has made this a very successful fundraiser.  Betty has about 24 books left and is hoping to sell them soon!  They make great gifts for friends, teachers, nurses, doctors, aunts, uncles, friends, baby sitters, pet sitters, mail carriers... any and every one!

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

Your DBA Ribosomal Protein Gene's Name is Changing!!

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director

Here lies one whose name is writ in water


Or so says the headstone on the grave of John Keats in a cemetery in Rome.  These words bring to mind the fleeting image of a name, somehow created on the water's surface only to disappear as Brownian motion and diffusion conspire to cause the name to dissipate.  Imagine if you will, this name disappearing and then reappearing as another.  The second law of thermodynamics would tend to argue against this possibility - systems spontaneously move to maximize entropy (disorder) - to reverse this process and create order from chaos, energy much be added to a system. 


With this in mind, let us turn to this month's Journal Club.  The chaos in question is a nomenclature for ribosomal proteins that has been cobbled together over a 40+-year span creating considerable confusion and frustration for individuals working in the field.  The energy to reverse this trend and make order from chaos comes from a group of ribosomologists that spend their days puzzling over the three-dimensional structures of these enormously complex particles.  Their studies began with ribosomes from bacteria found in exotic locations, like thermal vents in the sea, because these ribosomes were more stable to bombardment by the X-rays used to solve their complex structures.  They then turned their gaze to ribosomes from more garden variety microbes like Escherichia coli and have more recently turned their attention to ribosomes from organisms like us.  The problem for the structural biochemists is that the names used for ribosomal proteins in the different systems described above can differ even though the ribosomal proteins from one system to the next can be related; having common structures and functions.  The structural biochemists have decided that nomenclature for ribosomal proteins that has arisen over the years is untenable and must be changed to a more uniform system allowing ready comparisons of ribosomal proteins from one system to the next.  Most others working in the ribosome field agree to this change, although it is generally realized that this transition will not be without a certain amount of discomfort and anguish from interested parties. 


One such interested party is the DBA community, particularly those patients with mutations in the eleven ribosomal proteins genes that have so far been shown to cause DBA.  The names for each of these genes will change.  In some cases this change will be rather subtle.  In others, the change will be more dramatic.  Before getting into these specific changes, I thought I would first provide a little background as to how we got to where we are today and the need for this change.

CONTINUE READING ARTICLE HERE (A chart with all gene name changes is included.)       

We're at ASH
ASH booth 2012

DBAF & DBAC will be exhibiting together at this year's meeting.

It's almost ASH time! The DBA Foundation will be exhibiting at the 55th ASH Annual Meeting and Exposition. The meeting is attended by over 20,000 hematologists from all over the world and will be held in New Orleans from December 7-9, 2013. This year we are proud to be exhibiting next to our friends, DBA Canada, giving Diamond Blackfan Anemia 20 feet of space for all the doctors to see! Please tell your doctors to visit us at Booths 3002 & 3004 in not-for-profit row!

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