Issue: # 42
September 2014 
In This Issue

Help a DBA Mom Win Research Dollars

Morrison Family

We NEED your Daily Vote to help win $25,000!

We are so excited that DBA Mom and co-founder of DBA Canada has been chosen to be one of eight finalists in the Scotiabank Game Changers Competition! Jenn Morrison has already won $1000 and is now competing for $25,000 for DBA Canada.

As you know, DBA Canada and the DBA Foundation work closely and have funded many research projects together. Please help Jenn secure these funds for DBA Canada! We NEED the money to continue funding DBA research. 

Facebook users, please check it out and VOTE HERE.  Voting begins 9/29/2014 and ends 10/19/14. You can vote EVERY DAY! Please feel free to share the link on your Facebook profile page and ask your friends to help us secure $25,000 for DBA research by voting daily for Jenn.

Congratulations to Jenn on winning $1000 and thank you to all those that voted in the first round of competition. Please help her win the $25,000 in this last round. Vote everyday!

The easiest way to vote is to scroll down below the "Sign in" box and hit the Facebook button to sign in using your Facebook account.  It will ask you a couple of questions the very first time you sign up. After that it will take you to a page that says "Are you sure you want to vote for Jenn Morrison" YES!!! Thanks for your help, everyone!



Upcoming Events

Friends of DBA 5K / 1 mile Walk 
October 4, 2014
Fox Meadow Golf Club
Medina, OH
Jim & Carol Mancuso

DBA Craft/Bake Sale & Blood Drive
October 24, 2014
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" 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:
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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
Thank you Supporters and Dr. Izraeli

The Diamond Blackfan Anemia Foundation (DBAF) is grateful to our

Dr. Yehudit Birger & Dr. Shai Izraeli

families, friends and supporters that allow us to continue to fund DBA research projects. In April, the DBAF provided gap funding for Dr. Harvey Lodish's project entitled, "High-throughput screening identifies many novel potential therapies for Diamond Blackfan Anemia." In May, the DBAF funded Dr. Daniel Finley's project entitled, "A new mode of ribosome regulation specific to reticulocytes." In June, Dr. Vijay Sankaran was awarded a grant for his project, "Defining GATA1 Transcriptional Alterations in Diamond Blackfan Anemia." In July, the DBAF awarded an additional $95,000 to Dr. Harvey Lodish. In September, the DBAF, in partnership with DBA Canada, provided a grant to Dr. David Bodine for his project, "Assay Development and Preliminary Screening of Small Molecules to Increase Ribosomal Protein Levels." This month the DBAF is proud to announce the funding of another important project.

The Diamond Blackfan Anemia Foundation is proud to support the research of Dr. Shai Izraeli, Professor in the Department of Human Molecular Genetics and Biochemistry at Tel Aviv University and the Head of the Childhood Leukemia Research Institute within the Department of Pediatric Hematology/Oncology and the Cancer Research Center at Sheba Medical Center, Israel. The DBAF provided a $32,000 grant for Dr. Izraeli's project entitled, A mouse model to study the role of GATA2 in anemia caused by GATA1s mutation.

 Dr. Izraeli stated, "Testing our hypothesis could not be done without the DBA Foundation's funding. Given that I have been, until now, primarily a childhood leukemia researcher outside the bone marrow failure field and given the preliminary high risk hypothesis, no competitive grant would have funded this project. DBAF has given us the essential seed money to test our hypothesis. As a physician scientist I can testify that the patients and families give us the motivation to do this research."

Inherited mutations in GATA1, leading to the formation of a shorter protein called GATA1s, were recently discovered in several families with Diamond Blackfan Anemia. Dr. Izraeli has been interested in GATA1s since the same mutation appears in leukemias in patients with Down syndrome. While attempting to create a mouse model of these leukemias, Dr. Yehudit Birger, a senior investigator in Dr Izraeli's laboratory, discovered that mice carrying the GATA1s mutations had fetal anemia. Detailed gene expression analysis revealed high expression of GATA2, another GATA factor. GATA2 and GATA1 have opposing activities on erythroid differentiation; GATA2 blocks, while GATA1 promotes, erythroid differentiation. Dr. Izraeli and Dr. Birger hypothesize that the high ratio of GATA2/GATA1s is at least partially responsible for the anemia observed in mice and humans with GATA1s mutation.

To test this hypothesis, they will conduct a genetic experiment lowering the dose of GATA2 in GATA1s mice. If successful, this experiment will lead to a search for GATA2 "druggable" targets whose modification may at least partially ameliorate the anemia in DBA patients with GATA1s mutations. Furthermore, the recent findings published by Dr. Vijay Sankaran and colleagues that suggest a deficiency in GATA1 underlies the broader class of DBA patients with ribosomal gene mutations,  expands the potential relevance of Dr Izraeli's proposed research.

Amazon Shoppers... This One's For You!
Give while you shop

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!  
Become A Monthly Donor
Commit to  a Cure
YOUR donations help us to continue funding research! Over the past two years, The Diamond Blackfan Anemia Foundation donation_jar_give.jpg

has reached out to our families asking for their support. Thank you to the families that have responded with their personal donations, and thank you to the families that have made a monthly pledge. We are so pleased that more and more families are making a monthly commitment to the DBAF. From $20/month to $200/month, these monthly donations are easy to set up through your bank or through our website using a credit card or PayPal. Of course, a monthly check can also be mailed to the DBAF. Please join the many other families that have made this commitment.

Your generous support is appreciated and will help all DBA families. Please visit our website for donation information.

While we are proud of our accomplishments, we realize we must continue to work diligently to fulfill our mission. We need your help. Please consider partnering with us to help find a cure for DBA. I am happy to answer any questions you may have regarding fundraising efforts or the DBAF. Thank you for your careful consideration.

Please commit to find a cure!

Dawn Baumgardner
Executive Director

Show Us Your Logo

Many thanks to David and Brandi Voltz for initiating a hoodie fundraiser to benefit the DBA Foundation. A total of 236 sweatshirts were ordered and the DBAF will receive $3,210. The hoodies are expected to ship in about two weeks. Send us your photo sporting your DBA hoodie. We'd love to feature YOU in this spot! Many thanks for your support.

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

Freiburg or Bust

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director

It was 60 years ago on this very same date that your intrepid reporter took his first breathe after being whacked on the behind by some hospital employee somewhere in a northern suburb of St. Paul, Minnesota.  This evening, however, I find myself eating dinner at the Greiffenegg Schlössle here in Freiburg, whilst being serenaded by representatives of 26 countries with a rousing chorus of "Happy Birthday to You."  Like me, the physicians and scientists from these 26 countries were in Freiburg to attend a conference entitled, DBA: Building Global Bridges.

The conference was organized by Drs. Charlotte Niemeyer and Marcin Wlodarski of the University of Freiburg; Alyson MacInnes, Utrecht University, Netherlands; and Lydie Da Costa, Hôpital Robert Debré, Paris. The goal of the conference was to bring together physicians and scientists from all over the world to establish networks and facilitate the exchange of information with the goal of improving care for DBA patients on a worldwide scale.  Speaking for myself, I was surprised by the scope of the conference.  While I fully expected to see representatives of many European countries at the meeting, I was amazed to see representatives from the Middle East, including: Iran, Saudi Arabia, Lebanon, Israel and the Far East including, South Korea and China.

Friday the 19th was the first full day of the meeting and after introductory comments by the organizers, we began what could be described as a "Parade of Nations," where representatives from each country gave a short talk summing up the status of DBA in their country.  Each speaker used a standard template created by the conference organizers that included statistics like the number of DBA patients in their country (from as many as 720 in the North American DBA Registry to as few as 4 patients in Lithuania), treatment strategies, genetics (if known), and any challenges that might be encountered while serving DBA patients in different regions and cultures throughout the world.

In looking over the program before the conference started, I couldn't help but wonder whether a series of talks that appeared to be largely repetitive in nature would hold my interest.  I needn't have worried; I found myself totally engrossed listening to physician after physician discussing the challenges associated with serving DBA patients in their respective countries.  Some of these challenges were common to all countries whether big or small, developed or developing, but there were also problems more specific to certain countries.  For example, issues relating to geography (a center in Moscow working with patients in Vladivostok 9,300 km [5,812.5 miles] away) or trying to keep track of patients in largely nomadic populations seen in certain parts of the Middle East.  Societal influences can also make gathering information on things like congenital anomalies difficult, as certain cultures may be less willing to share family information.  I can't help but think that clinicians listening to colleagues from other countries received some degree of comfort in knowing that they were not alone in their challenges and that the exchange of information in a venue like this could lead to improvements in care of DBA patients throughout the world.

One of the more fascinating sessions of the day was entitled, "Challenges of the past, expectations for the future: what can we learn from the wise folks." The wise folks here were an illustrious panel of physicians who have been working in the DBA field for many years.  This panel included Jeffrey Lipton (USA), Ugo Ramenghi (Italy), Charlotte Niemeyer (Germany), and Thierry LeBlanc (France).  They discussed such weighty topics as when to start steroids and what amounts to use and how they decide when to go to transplant.  It should come as no surprise to readers of this column that a topic that generated considerable discussion among members of this panel was the topic of iron overload and how this problem remains the major cause of death in the DBA patient population. It was generally agreed that there is something unique about DBA patients in how they store iron and importantly, how this leads to worse outcomes in DBA patients relative to patients with other transfusion-dependent diseases.

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