Ironman Joe Crelier completes 140.6 miles for TEAM DBA!|
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
of DBAF Golf Outing and Silent Auction
September 18, 2010
Cherokee Hills Golf Course
Valley City, Ohio
Jim and Carol Mancuso
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!
thanks to all those who made this year's
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,
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!
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.
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 firstname.lastname@example.org
. Thank you, Ellen, for all that you do for our patients and families!
The 2010 DBA group was the largest group EVER to experience