Issue: # 51
July 2015 
In This Issue

Dazzling Diamond of Hope is Awarded to the Brady Family at Camp Sunshine

The Diamond Blackfan Anemia Foundation  (DBAF) sincerely thanks everyone who donates and helps to raise funds to support our mission to provide support for DBA patients, families, and research. During our family meeting at Camp Sunshine, families are recognized for their support and fundraising efforts. A fun, new "DBA family tradition" was introduced in 2012 and has continued... the Dazzling Diamond of Hope!  Much like Camp Sunshine's coveted Love Cup, the Dazzling Diamond of Hope is a fun way to bring us all together while applauding our families' accomplishments.

This year's award was presented at Camp 2015 to the Brady Family for their collaborative  fundraising efforts with Mazda. 

Mazda's Drive for Good event ran from November 21, 2014 through January 2, 2015. For every new Mazda vehicle purchased during this time period, Mazda donated $150 to one of four national, or 44 local charities, with the choice of the charity being left up to the customer.

Nationally, Mazda worked with St. Jude Children's Research Hospital, American Red Cross, American Heart Association and Mazda Foundation. Additionally, Mazda offered a local charity option to its customers by partnering with an additional 44 charities based on dealer input in the local markets.  The owner of Modern Motors Mazda Dodge, Jim Brandolini (whose granddaughter Quinn Brady has DBA) and Lauren Brady (mother of Quinn) worked with Mazda corporate to get the DBA Foundation to be the selected local charity for the Northeast Region.

In order to encourage customers to donate to the DBA Foundation, a local television station filmed a commercial showing the Brady & Brandolini families discussing DBA and the impact it has had of their family.  They also had posters created and pamphlets talking about DBA and the DBA Foundation to educate customers on this rare disease.  Each salesman at the dealerships really pushed for their customers to choose the DBA Foundation based on all the marketing collateral created and how knowledgable they were about the disease and the foundation.

In total the campaign raised $31,350 for the DBA Foundation.  This amount was within the top 10 highest of any dealer group across the country.

A big THANK YOU to everyone involved!

Upcoming Events
Friends of DBA Golf Outing 
September 19, 2015 
Briarwood Golf Course
Broadview Heights, OH
Jim & Carol Mancuso

Friends of DBA 5K / 1 mile walk 
October 4, 2015
Fox Meadow Golf Club
Medina, OH
Jim & Carol Mancuso

Friends of DBA Night at the Races
March 12, 2016
Weymouth Country Club
Medina, 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" Stickers Available
Dawn Baumgardner 
  window sticker


7" x 5" Decals Available
David Voltz
Cure DBA decal_Voltz.  


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.
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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
Camp Sunshine 2015
  DBA Family Meeting 2015 - Another Memorable Year!

Oh... Camp Sunshine... we are so very grateful! Through the generosity and compassion of our friends at Camp Sunshine, DBA families and patients from around the world met in Casco, Maine from July 12-17, 2015. Our tenth family meeting was a huge success! The week was filled with information, emotions, friendship, and hope. As the children were engaged in fun camp activities with the masses of yellow-shirted, amazing volunteers, parents and adult DBA patients attended educational seminars presented by experts in their fields.

The week's itinerary was full and informative. The DBAF is proud to host the family retreat and give our families and the doctors and researchers a chance to meet and collaborate. A big thank you to the following presenters:
  • Dr. Blanche Alter - Hematology 101/DBA 101 
  • Dr. Hanna Gazda  - DBA Gene Discovery
  • Dr. David Bodine - Where do we go from here?
  • Dr. Adrianna Vlachos - In Vitro Fertilization and Preimplantation Genetic Diagnosis 
  • All Doctors - Question & Answer Sessions
  • Dr. Adrianna Vlachos & Eva Atsidaftos - DBAR Information
  • Dr. Adrianna Vlachos - Introduction to DBA and Its Treatment
  • Dr. Angela Smith - Hematopoietic Stem Cell Transplant
  • Dr. Adrianna Vlachos - Update on Clinical Trials
  • Dr. Joelle LaClair - Complementary Medicine
  • All Doctors - Question & Answer Sessions
  • Dr. Steve Ellis and Dr. Adrianna Vlachos - Iron Overload, Measurements and Treatments
  • Dr. Adrianna Vlachos - Life with DBA
  • Dr. Harvey Lodish - Enhancing progenitor cell self-renewal: a new approach to stimulating red cell production
  • Dr. Vijay Sankaran - A Clinician/Researcher's Perspective
  • Dr. Steven Ellis - Direction of DBA Research & Overview

Additional presentations will be added to our website as they are received. To read more and view posted PowerPoint presentations, CLICK HERE.

A Parent's Perspective...Camp Sunshine 2015 
By Casey Sears Wilson

It is difficult to summarize an experience that we had no idea would be so impactful. However, I want to take the time to do so in a way that will permit anyone willing to take the time to read th
is to step into our grateful shoes and also to recognize the many gifted people that were involved in making our time at Camp Sunshine so welcoming, compassionate, empathetic, hopeful and empowering.

Camp Sunshine, located on Lake Sebago in Maine, is a year-round retreat for people with life-threatening illnesses and their families. The program is free of charge to all families. Yes, you read that correctly, our large family of 6 applied and was accepted to this amazing Camp from July 12-17. All that we had to do was get there.

Our son Caleb has DBA. He fortunately responds to a low dose of steroids every two days that somehow convinces his bone marrow to make enough red blood cells. Most people with DBA are diagnosed in the first year of life. Caleb did not show signs of anemia until he was about 17 months of age. However, some people are diagnosed at much older ages. What causes the red blood cells to no longer be made with the capacity for longevity is an ongoing question. Also, many who initially respond to steroids can either go into remission or even no longer respond and become transfusion dependent. Once again, there are no trends to explain who will follow which path. It really is a roller coaster, life threatening condition.

We pulled up to the Camp, not knowing what to expect and were met by a sea of people in yellow shirts, welcoming us to Camp Sunshine. Wonderfully disarming! These yellow-shirted, smiling faces (no, not minions) really made the entire camp experience over the moon fantastic. They helped us carry all our bags to our room, sat and ate with us and shared their own lives and listened to our stories, too. Caleb and Zac were in the tot lot while Jayna and Ziva were in the nursery group. However, these two groups all met in the same giant, well-equipped room. There were over 40 kids in this age group at the Camp - I am told that this was their largest group ever (in this age group). There were enough volunteers for a less than 1:2 counselor to child ratio. Our kids were treated like royalty. There were so many things to do!

The most empowering parts of the whole trip were the sessions with the doctors and researchers.

Show Us Your Logo!
Spread Awareness... Share our logo

It simply does not get any more bitter sweet.This photo was taken minutes before the Morrison family left Camp Sunshine to head home. Andie was able to give her favorite counselor, Dan, one last (unexpected) hug. The picture truly reflects the lasting relationships and genuine care our families receive at Camp Sunshine. Thanks Camp Sunshine, until we meet again...  logo
Here's the challenge:
We would like to see how many places we 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


DBA Bracelet of Hope

Handcrafted in Blue Ridge, GA, this meaningful bracelet features five leather bangles in "DBA red." Each bangle represents the "facets" of our DBA world - patients, families, researchers, clinical caregivers, and donors. The silvertone bar on each bangle symbolizes the progress made so far and the silvertone beads are the glimmers of hope we have for a cure. One lone, lab-created ruby signifies the "elusive" red blood cell and is embraced by silvertone, portraying our hope and love. Bracelets are $40 each + $2 US shipping. All proceeds benefit the DBA Foundation to fund research. An explanation of the bracelet is included. Order via PayPal at or send a check to DBA Bracelets, c/o Kathi Vroman 6268 Benbrooke Way, Acworth, GA 30101. These are beautiful! Thank you, Kathi.

Journal Club
"Vive la Différence"

Steve Ellis
Steven R. Ellis, Ph.D.
DBAF Research Director 

I swear by Apollo the physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses as my witnesses, that, according to my ability and judgment, I will keep this oath and this covenant:

So begins the classical version of the Hippocratic oath 
Each May I listen to a modern version of this oath spoken by the 160 or so students graduating from medical school here at the University of Louisville. It is a very emotional moment, the capstone of a long and difficult journey in becoming a physician. The students stand and are joined in this oath by any physician in the audience wishing to reaffirm their commitment to the profession.

Though dressed in academic regalia and having had a part in each student's training on their path to becoming a physician, I remain seated with my mouth shut savoring the commitment others are making to the well being and security of their patients. My lack of participation in this solemn occasion is not because I don't agree with the words being spoken or if faced with situation where the dictums of this oath may be relevant in my life I wouldn't try my best to live up to their standards; it is just that my training as a scientist took a far different path from the training of these graduating students, and I simply lack the skills and authority to help patients in the same way as a practicing physician.

Which brings me to this month's Journal Club article published in the Journal of the American Medical Association as a medical news and perspectives piece [1]. The article is entitled, Exome sequencing comes to the clinic, which seems innocuous enough given the number of times the importance of various types of DNA sequencing technologies have been discussed in this forum as they pertain to gene discovery in DBA. The article, however, takes a dangerous turn in my opinion by suggesting that a patient somehow avail themselves of different resources to obtain exome sequence data and then armed with this information contact a scientist to figure out mechanisms underlying their condition and then (and only then?????) with a clinician determine a diagnosis.

I can't help but think that the JAMA article blurs the boundaries between work being done under a physician's lead as part of an interdisciplinary group engaged in both clinical practice and research and the idea of a patient directly contacting a researcher to obtain information for a clinical diagnosis.

As a non-physician scientist, I work with several consortiums of investigators studying various aspects of DBA. Each of these consortiums is led by one or more physicians who act as point persons for interactions with patients and their families.

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