Issue: # 30
May 2013 
In This Issue
2013 Family Meeting
You've Got What it Takes
DBAF Congratulates Marie Arturi
Jacks Fight For a Cure Benefits DBAC
Important Message
Show Us Your Logo
Journal Club
Like Us and Follow Us

Camp Sunshine logo
2013 Family Meeting

The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is proud to announce our ninth national family retreat. This retreat will take place during the week of July 21 - 26, 2013 at Camp Sunshine  , which is located at Lake Sebago, Maine. Air carriers fly into Portland, Maine and ground transportation is provided by Camp Sunshine to the campsite.

Camp Sunshine caters to families with various medical conditions and disabilities, and a full time medical doctor is on staff. They also plan daily activities for the entire family, and offer parents an opportunity to share their experiences and exchange information. Aside from the benefits of meeting other families, we have also obtained commitments from experts in the medical field to come and share their expertise and to update us on current research regarding DBA.

In the past, Camp Sunshine has proven to be an unforgettable experience for the families that have attended.  We are grateful to Camp Sunshine for extending an invitation to us once again this year. Lodging and three meals daily are provided, as well as planned activities and excellent childcare. Additional information and applications are available at our website 


Final selection of families chosen to attend is determined by Camp Sunshine.  Completed applications and physical examination forms should be returned to Camp Sunshine as soon as possible, due to the limited availability of family accommodations.  Travel expenses are the families' responsibility.  If you have any questions or concerns regarding Camp, please contact Dawn  at 716.674.2818.  We are looking forward to seeing many of you this summer! 

Upcoming Events


Miracle Mile: Makenna and Maggie's Race for Research (to benefit DBAF abd CureSearch)

July 3, 2013 
Houlton, Maine
Contact and Info:
Facebook page 
Kevin J. Gately Foundation Golf Outing
July 15, 2013 
Black Swan Country Club
Georgetown, MA



DBA Family Meeting 
July 21 - 26, 2013  
Camp Sunshine
Casco, ME 
Dawn Baumgardner

Friends of DBAF Golf Outing
& Silent Auction  
September 7, 2013
Briarwood Golf Club
Broadview Heights, OH
Jim & Carol Mancuso

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
(2 Styles)
In honor of...
In memory of...
Dawn Baumgardner 
  donation donation
5" x 5" Decals Available
Dawn Baumgardner 
  window sticker

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
You've Got What it Takes to Make a Difference:
The "Write Stuff" cure dba sand

Although many advances have been made in understanding DBA, more needs to be done if we are to find better treatment options, and hopefully, a cure. As DBA families and friends, we have a a vested interest and a responsibility to ensure that research continues.
Our hope for a cure is research. The DBA Foundation has recently received numerous grant proposals from researchers around the world. We are excited and encouraged that DBA has caught the attention of prominent researchers. But... that means we need your support more than ever! 


The DBAF is asking our families and friends to support our efforts with your personal donation and commitment. Next, we are hoping for your participation in a letter writing campaign. The DBAF has written and printed the letter for you, and will provide you with the requested number of letters and envelopes. Simply sign the letter with a personal note and mail to your friends and families.  It's quick and easy! The DBA Foundation is a 501(c)(3) organization and all donations are fully tax deductible as allowed by law.


Our hope for a cure is research.Your participation in this letter writing campaign is encouraged and appreciated. The DBA Foundation is proud of our accomplishments. We realize that it is only through the commitment of our friends and families that we are able to fulfill our mission of supporting DBA patients, families, and research.  


Please feel free to contact Dawn regarding this opportunity to help the DBA Foundation at or 716.674.2818. 

THANK YOU for your support!  Donate TODAY!
DBAF Congratulates Marie Arturi and the Entire buncee® Team!
buncee®, founded by a Diamond Blackfan Anemia family, was selected as a winner of the 2013 TiE50 "Top Startup" Companies
buncee team
Marie Arturi (standing, second from left) and her winning buncee team!


The internet start-up company, buncee®, was selected as a 2013 TiE50 "Top Startup" Winner by TiE Silicon Valley. The organizers of TiEcon 2013 screened over 1,100 companies from 24 countries and chose 50 best-of-breed companies following the Finalist Presentations conducted at the TiEcon 2013 conference in Silicon Valley on May 17, 2013. is a website that gives users a digital canvas called a 'buncee' and multiple easy-to-use tools where they can add personal photos, text, drawings, and online content such as YouTube videos, Soundcloud audio, and images from flickr, Google and public Instagram, to create customized e-greetings, announcements, digital scrapbooks, personal and business stories, educational lesson plans, interactive presentations and more. buncee's goal has been to make it easy for even the most non-technical individuals to create and share engaging and interactive multi-media creations that can be shared privately through email or publicly through any of their favorite social media networks.

Marie Arturi, CEO of buncee and Executive Director of the Daniella Maria Arturi Foundation, was inspired by her desire for a more flexible and creative way to send digital thank you's, foundation updates and event invites to supporters of their family's Foundation, named in honor of their daughter Daniella who lost her life to DBA. It is the hope of Marie and the entire buncee team that by building a platform where users can enjoy a fun, easy and interactive way to create and share their digital greetings, memories, causes, interests and more, that buncee will become a tool used by millions and in turn help generate proceeds to raise awareness and funding to help find a cure for DBA. Marie stated, "We sincerely hope that with the success of buncee we will have a funding mechanism to continue supporting research in DBA."

Congratulations Marie and team!  We wish you continued success! THANK YOU for your continued commitment to DBA!
"Jack's Fight For a Cure" Benefits DBAC
Many thanks to the Pereira family!
Jack at Gala


Four year old, Jack Pereira of Orangeville, Ontario was all dressed up and had someplace very special to go! Jack's family and friends came out to support the third gala held in his honor to benefit DBA Canada. This year's event raised almost $40,000.  

DBA Canada (DBAC) has partnered with the DBA Foundation to help fund two research projects and the organizations will be working together to fund more DBA projects this year. Organizer of the event and Managing Director of DBAC (but most importantly, mom to Makayla, Lucas, Mya, and Jack!), Janet Pereira said, "Our love for Jack motivates us and this is what we have to do. My husband Nel and I need to help find a cure for our son, and for all DBA patients. There are so few DBA families, we feel it is our responsibility to do what we can. We are thrilled and grateful for the support we have received."

The DBA Foundation thanks Janet and Nel, their families and friends, the Gala's committee, and the event sponsor, Esso Canada for their hard work and support!

North American DBA Families... We don't want to lose you! We want to keep you updated and informed! We need your attention!

As you know, in December 2012 our new website was introduced. Since then, numerous requests for contact information updates were made and many of you responded (thank you!). Here's the problem... there was a glitch with the new server and the forms received since December were all missing a line of information. It's finally fixed! So... we need you to please go to our website and register again. Thanks and sorry for the inconvenience.

Show Us Your Logo
Tyler drawing

Out of the mouths and from the hearts of big brothers. This touching masterpiece says it all and was created by 11 year old
Tyler Green, brother of 7 year old, Peyton Green, who has DBA. The Green family lives in Florence, NJ. We love the universal sentiment, the sweet pictures, and our awesome logo!  Great job, Tyler!!


Here's the challenge: We would like to see how many places we DBAF Logo can show off our logo! Snap 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

Size Matters 

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director 

As you are all aware, Diamond Blackfan anemia is referred to as a macrocyctic anemia.  The term macrocytosis, meaning large cells, relates to the increased size of red blood cells in patients with DBA. An explanation for this phenomenon may reside in a recent manuscript published by Sankaran and colleagues in the journal, Genes and Development 1.


Before exploring the Sankaran paper, I think it is worthwhile to provide a little background on macrocytic anemia.  In this regard, it is important to point out that DBA is not the only macrocytic anemia.  In fact, macrocytosis is observed in the megaloblastic anemias which are commonly encountered by the medical community.  Two causes of megaloblastic anemia are deficiencies of folic acid and vitamin B12.  The increased size of red blood cells in individuals with folic acid deficiency is relatively easy to envision, so I thought I would begin there.  


Folic acid plays an important role in intermediary metabolism; the chemical transformations that occur within cells.  Specifically, folic acid plays a role in reactions where single carbon units are used to build larger, more complex molecules.  Some of these more complex molecules are the nucleotides which serve as precursors for the synthesis of DNA and RNA.  Thus, individuals deficient in folic acid have a problem making copies of their DNA, a critical component of cell division.   DNA needs to be copied so new cells created when cells divide will have the necessary genetic blueprint for them to fulfill their functions within the body.  Another component of cell division is cell growth.  If a cell were to divide without growth, the cells would get smaller and smaller until there would be nothing left.   Thus, cell growth and division go hand in hand as cells multiply within the body.   

Under most circumstances that is.  

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