Issue: # 29 
April 2013 
In This Issue
2013 Family Meeting
Taking Care of You
Important Message
Show Us Your Logo
Important Announcement
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


Jack's Fight for a Cure

(to benefit DBA Canada)

May 10, 2013

Caledon, Ontario


Janet Pereira



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!   


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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
Taking Care of You:
Support for Caregivers heart
Living with a chronic illness affects all members of a family.  As a parent, being told your child has been diagnosed with a rare, chronic disorder can be overwhelming and frightening. Caring for your child, also means caring for yourself, the caregiver.
This information was provided by KidsHealth®, one of the largest resources online for medically reviewed health information written for parents, kids, and teens.
Taking Care of You: Support for Caregivers

If your child has a serious illness, the caretaking that falls to you is undoubtedly intense. But of course you do it willingly. After all, you'd do anything for your child, including switching places in a minute if only that were possible.


Instead you give all that you can, in every other imaginable way. It's harder than anything you've ever done, and honestly, there are moments when the sheer magnitude of what you're up against is so overwhelming that you just want to run and hide. Ask any parent who's done this before and you'll find out something very important: You're not alone.


The Caregiver's Dilemma

When you're the caregiver of a child who is seriously ill, it can feel as if the whole world is on your shoulders. Your sick child needs you. You may have other children who need you. Your spouse needs you. Your job - however pointless work might seem right now - needs you.

Yet there's only so much you can give before you will feel mentally, emotionally, and physically drained. That's why it's a necessity - not a luxury - to spend some time taking care of yourself so that you can recharge and feel empowered to continue to support and care for your child.


Tips for Caregivers (Click the link to continue reading this article)


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
Soto family


Go Team Lily!  Many thanks to the Soto family for hosting a blood drive and organizing a craft and baked good sale to benefit the DBA Foundation!  The Liberty, MO family, along with many of their friends and family members, showed their love and support for 10 year old, Lily by donning their beautiful purple shirts displaying Team Lily on the front and our logo on the back.  Awesome job, Soto family!


Here's the challenge: We would like to see how many places we Lily shirt 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

Important Announcement
Research Study Needs YOU!
The DBAR has noted that many patients with DBA have issues that may be due to the hormone-producing gland (endocrine) system abnormalities, including short stature, thyroid dysfunction, delayed puberty in both boys and girls, and diabetes. We are interested in determining if these problems are due to long-term continuous steroid use, iron overload from transfusion therapy or from DBA itself. We are therefore recommending an endocrine evaluation for all DBA patients, those with endocrine issues and those without. We are hoping to assist those with endocrine abnormalities as well as document what they are. We are also gathering information on patients without endocrine problems to see if we can screen for them, predict them in advance, and possibly treat them before they occur.
The Divisions of Pediatric and Adult Endocrinology at Cohen Children's Medical Center and North Shore LIJ Health System, respectively, in collaboration with the Diamond Blackfan Anemia Registry (DBAR) are conducting a research study to understand the effects of steroid and blood transfusion therapy on the endocrine system in patients with Diamond Blackfan anemia.  Researchers wish to compare the endocrine function of DBA patients (those receiving and not receiving blood transfusions) to patients with beta-thalassemia major who are also treated with chronic transfusions.
Eligibility Criteria:

You may be eligible to participate in this study if you are:

  • Age 1-39 years; and
  • Diagnosed with DBA; and
  • Enrolled in DBA Registry (DBAR)

You may not participate in this study if you are:

  • Pregnant; or
  • Have received a bone marrow transplant

If interested please contact Eva Atsidaftos or Ellen Muir at the DBAR at 888-884-3227 or Dr. Amit Lahoti (Pediatric Endocrinology fellow) at 516-472-3769 or 516-472-3750.  

Participation in the study involves a standard endocrine evaluation. This includes blood tests that can be ordered and drawn at your institution. In this study, we will ask for a usual endocrine evaluation on steroid dependent patients, red cell transfusion dependent patients, as well as those patients in remission. The participation consent asks for permission for the DBAR and our endocrinology collaborators to receive the endocrine evaluation results. We will hopefully be able to have some results available by this summer. Our goal is 75 DBA patients and 25 thalassemia patients total for the study. THANK YOU IN ADVANCE FOR YOUR PARTICIPATION!!!  


Journal Club

Cancer Incidence in DBA - Reprint from May 2012 

Steve Ellis
Steven R. Ellis, PhD
DBAF Research Director 

This month's Journal Club is a long awaited paper. It is a collaborative effort between the folks at the DBA Registry (DBAR) in New York and the National Cancer Institute (NCI) in Rockville, Maryland1.  The two groups got together and carefully analyzed the incidence of various forms of cancer in patients within the DBAR.  This study represents one of the most comprehensive analyses of cancer incidence in DBA patients. (abstract available here).


Of 608 patients included in the DBAR, there were 15 cases with solid tumors, 2 with leukemia, and 4 with myelodysplastic syndrome.  Of the 608 DBA cases in the DBAR, 589 had no cancer or MDS.  The numbers don't exactly add up as 2 of the reported cases with MDS also had either a solid tumor or leukemia.


What do these numbers mean?  The cancer numbers seem low, at least numerically.  But the important consideration is: What would the numbers be if you looked at 608 people in the general population? The manuscript reports that the risk of all cancers in DBA was increased approximately 5.4 times that of the general population.  While this number is significant, it was substantially below that reported for Fanconi anemia and Dyskeratosis congenita, two other inherited bone marrow failures syndromes.


Like the general population, the risk of cancer increases with age with a median age at presentation of 41 years in DBA patients.  This is compared with a median age of presentation of 66 years according to the SEER database at the NCI (  The authors state that this new information on the incidence of cancer strongly suggests that patients with DBA should undergo counseling and surveillance for cancer at an age earlier than that of the general population.


One thing missing from the current analysis is whether individuals with mutations in certain DBA genes have an increased risk of cancer relative to others.  The reason for this is that gene discovery still lags behind the clinical information available for DBA patients, and the fact that some patients included in these analyses are no longer available for current genetic analysis.  As we close in on identifying all affected genes in DBA patients, these relationships, if they exist, should become more apparent.


Since I am neither a physician nor a genetic counselor, my role with this Journal Club is to bring this paper to your attention so you can discuss it and its implications with your health care provider.  I would very much encourage you to do so as there is considerably more information within this manuscript than outlined above which will factor counseling and surveillance strategies.


1.          Vlachos, A., Rosenberg, P.S., Atsidaftos, E., Alter, B.P., and Lipton, J.M. (2012) Incidence of neoplasm in Diamond Blackfan anemia: a report from the Diamond Blackfan Anemia Registry. Blood 119:3815-3819 

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