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Issue #1 August 2010
In This Issue
Ironman Joe
Camp Sunshine
DBA Nurse
Ironman Joe Crelier completes 140.6 miles for TEAM DBA!

joeThankyou

Sixteen hours, 2 minutes and 30 seconds after he dove into the water on June 27, 2010, DBA Ironman Joe Crelier of Albuquerque, NM, crossed the finish line!  Exhaustion didn't stop him from proudly showing off his race shirt, stamped with the DBAF logo on the front and the names of DBA fighters on his back. The DBA Foundation is honored to have been Joe's charity of choice and is indebted to Joe and his family for all their hard work.  Joe's heroic effort, sponsored by Janus Charity Challenge, raised over $20,000.00 for the DBAF.  The DBAF and all our DBA families, sincerely thank Joe for his will of iron and heart of gold. Way to go, Joe!  Way to go TEAM DBA!
 
Upcoming Events

Friends of DBAF Golf Outing and Silent Auction

September 18, 2010
Cherokee Hills Golf Course
Valley City, Ohio

Contact:
Jim and Carol Mancuso
c-mancuso@sbcglobal.net

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The Diamond Blackfan Anemia Foundation (DBAF) is committed to keeping you updated and connected to the entire DBA community. We warmly welcome you to our new e-newsletter and look forward to serving your needs. The Diamond Blackfan Anemia Foundation is YOUR Foundation!  We encourage you to share your ideas, photos, and stories. Please contact us at DBAFoundation@juno.com.
Camp Sunshine - A Record Breaking Success!

Our sincere thanks to all those who made this year's
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session at Camp Sunshine a huge success. On July 11, 2010, the incredible staff and volunteers of Camp Sunshine warmly welcomed a record breaking number of families and DBA patients to the shore of Lake Sebago, Maine. The information, friendships, tears, laughter, and stories shared over the next six days were life-changing for many. Thank you Camp Sunshine and all our DBA campers for a year to remember!

This year's distinguished guests included Dr. Blanche Alter, Dr. Steven Ellis, Dr. Johan Flygare, Dr. Hanna Gazda, Dr. Christian Kratz, Dr. Jeffrey Lipton, Dr. Johnson Liu, Dr. James Stelling, Dr. Adrianna Vlachos, Dr. Lawrence Wolfe, Eva Astidaftos, and Ellen Muir. We are truly grateful for their expertise, dedication, and willingness to share their time and knowledge with our families. For those of you who were not able to attend (and those with rusty note-taking skills!), you should know that the DBAF's fall newsletter will summarize the lectures from many of the guest speakers so that all will benefit from this very important information. Additionally, we are in the process of posting some of the presenters' slides to our website www.DBAFoundation.org.

On behalf of our families, the DBAF proudly presented a check to Dr. Hanna Gazda for her continued search for the remaining genes responsible for DBA.  As most of you know, approximately 50% of those affected by DBA are aware of their specific genetic defect.  By continuing to fund her work, it is our hope that Dr. Gazda will be able to provide this critical information to the rest of our families.

Thank you to all who financially support the Foundation. It is only because of this support that we are able to continue to fund multiple research projects and conferences, as well as make Camp Sunshine an informative and rewarding experience for all in attendance. We look forward to working with more of our families in their future fundraising endeavors. It is because of you that we continue to exist. Your generous donations allow us to continue our mission of supporting patients, families and research.
Full Time DBA Nurse

It is with great pleasure that we announce Ellen Muir, MSN, CNS, will now be working full time as the DBA Nurse!  Ellen is located at The Steven & Alexandra Cohen Children's Medical Center of New York (formerly Schneider Children's Hospital), and we are very excited that our DBA families will have greater access to this valuable resource.  Ellen can be reached at 1-877-DBA-NURSe (877-322-6877) or emuir@nshs.edu. Thank you, Ellen, for all that you do for our patients and families!
 
people

The 2010 DBA group was the largest group EVER to experience Camp Sunshine!