Help us raise funds for the Diamond Blackfan Anemia (DBA) Foundation for research in finding a cure!! DBA is a
syndrome characterized by the failure of the bone marrow to produce red blood
cells andis
associated with a predisposition to certain cancers and congenital anomalies
(birth defects). We have started this Booster Campaign in conjunction with a Blood and Bone Marrow Drive in honor of our daughter, Caitlyn, who has DBA. It's our hope that one daya cure is foundfor this syndrome. Please help support us and our DBA Family by purchasing a DBA TShirt. All profits will go directly to the DBA Foundation. Thank you for your support!!
What is Diamond Blackfan Anemia? Diamond Blackfan anemia (DBA) is a rare bone marrow failure
syndrome characterized by the failure of the bone marrow to produce red blood
cells. It is usually diagnosed in the first year of life. DBA is also
associated with a predisposition to certain cancers and congenital anomalies
(birth defects).
The failure to produce red blood cells causes DBA patients
to become severely anemic. It is important to note that this anemia is not the
result of a deficiency in iron, vitamin B-12, folate, or erythropoietin, which
is a red blood cell stimulating hormone.
In recent years, the scientific community has made many
advances in understanding DBA on both the genetic and molecular levels. These
discoveries have already, and will continue to, aid in the diagnosis,
treatment, and clinical care of DBA patients. Breakthroughs made in DBA
research will unquestionably lead to significant progress in understanding
blood cell production, birth defects and cancer. These important implications have
brought global attention to this rare disease.
Mission: The mission of the Diamond Blackfan Anemia Foundation is to
advance research initiatives that promote a better understanding, therapeutic
strategies and a cure for this rare bone marrow failure syndrome. We are
dedicated to providing patient advocacy, support and education services to
individuals, families and medical professionals resulting in improvements in
the diagnosis, clinical treatment and management of the disorder, while
enhancing the quality of life of affected families worldwide.
About the Diamond Blackfan Anemia Foundation: Founded in 1994, the Diamond Blackfan Anemia Foundation,
Inc. (DBAF), a 501(c)(3) not-for-profit organization, was established to
provide support for DBA patients, families and research. The DBAF is
committed to furthering research to find a cure, while striving to educate and
empower our patients, their families and health professionals. Together, with
the support of DBA families and friends, the DBAF continues to fulfill our
mission. We pride ourselves on providing the following:
Funding
for independently reviewed critical research projects;Organization and/or financial support of international scientific meetings and
symposiums;Coordination
of meetings that connect DBA patients, families and world-renowned physicians;Informational literature, newsletters and updates for patients, family members,
healthcare professionals and other interested parties;Resources
and networking opportunities for families throughout the United States, Canada
and worldwide.
Is There a Cure for DBA? Currently there is no “cure” for DBA. However, with
appropriate medical treatment patients can live long and healthy lives. The two
most common forms of treatment are corticosteroids and chronic red blood cell
transfusions with appropriate iron chelation (therapy for removal of excess
iron accumulation due to red blood cell transfusions). Some DBA patients
are in remission (make sufficient numbers of red blood cells and are not
significantly anemic) and do not require medical therapy, but need to be
closely monitored for recurrence of anemia and other complications. Other DBA
patients may be candidates for a stem cell transplant (also referred to as a
bone marrow or cord blood transplant).
Supporters
Anything for the Brown family!
Supporting this campaign for our daughter, Caitlyn.
My son has DBA
Because it's a little thing that I can do!
For George, who is too strong and too happy for words, who deserves the world
For my sweet Caitlyn. Love you like a sister.
my cool friend Carson
For my buddy, Carson :)