News
Dr. Iskander Awarded Grant To Expand the DBA Research Group at Imperial College London
Grateful for the opportunity to collaborate with our friends at DBA UK, the Diamond Blackfan Anemia Foundation (DBAF) proudly awarded a $45,000 grant that will help expand the DBA Research…
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Two DBA Specialists Receive the American Society for Clinical Investigation’s Emerging-Generation Award
Congratulations to two incredible DBA specialists, Senthil Velan Bhoopalan, MBBS, PhD, FAAP of St. Jude Children’s Research Hospital and Richard A. Voit, MD, PhD of Harvard Medical School, Boston Children’s…
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Vijay G. Sankaran, M.D., Ph.D. and Richard A. Voit, M.D., Ph.D., have been awarded a $70,000 grant for their project entitled “Assessing preclinical safety of a unified gene therapy cure…
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Professor Strouboulis Awarded Grant for GATA1 Research
Professor John Strouboulis, Chair of Molecular Erythropoiesis at King’s College London was awarded $116,573.12 by the Diamond Blackfan Anemia Foundation with support from Friends of DBA and DBA Canada. The…
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ICC 2023: A Huge Success
The Diamond Blackfan Anemia International Collaboration Conference (ICC), hosted by the Diamond Blackfan Anemia Foundation, was a huge success. Researchers and clinicians from around the world came together to learn,…
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DBAF grants funding to Dr. Aldeeri and Dr. Yu of Boston Children’s Hospital for genomic sequencing project
The Diamond Blackfan Anemia Foundation, in partnership with Friends of DBA and DBA Canada, is proud to fund $138,408 for the research project of Dr. Timothy Yu and Dr. Abdulrahman…
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The NIH-sponsored, Phase 1/2 clinical trial enrolled its first DBA patient recently. Click here to learn more.
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Dr. Alter Receives ASH’s 2023 Wallace H. Coulter Award for Lifetime Achievement in Hematology
The Diamond Blackfan Anemia Foundation, along with the entire DBA Community, congratulates Dr. Blanche Alter on receiving the American Society of Hematology’s 2023 Wallace H. Coulter Award for Lifetime Achievement…
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DBA Dad shares his daughter’s story in published book: “Saving Katie – A Father’s Story”
Congratulations to DBA Dad, Steve Trebing, on the publication of his book “Saving Katie – A Father’s Story”, which has been released on Amazon. In this memoir, Steve recounts his…
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Grant Awarded to Dr. Cardenas and the Blackwell Lab
We love welcoming researchers who are new to the DBA field to the DBA Community! The Diamond Blackfan Anemia Foundation thanks Dr. Cardenas and the Blackwell Lab for their hard…
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DBAF Welcomes New Board Member
The DBAF is proud to welcome Jamie Dermatis to the board. Jamie officially joined the board in January 2023 and is mom to 4-year-old DBA patient, Jackson. While she is…
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14-year-old teen, Hallie Barnard, was gifted free front-row tickets to the Taylor Swift concert by a family who donated them to MD Anderson Cancer Center. When asked about Taylor Swift,…
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Lab-grown blood given to people in world-first clinical trial
Blood that has been grown in a laboratory has been put into people in a world-first clinical trial. https://www.bbc.com/news/health-63513330.amp
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Ribosome Synthesis Workshop
The 12th triennial Conference and 3rd EMBO Workshop on Ribosome Synthesis took place August 17-21 in Switzerland. The DBAF proudly supported this meeting with a $5000 sponsorship. With a focus on…
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Diamond–Blackfan Anaemia With Iron Overload: A Serious Issue
Something to add to your summer reading list is a recently published commentary from our Italian colleagues entitled, “Diamond–Blackfan anaemia with iron overload: A serious issue” https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjh.18393
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Ahwatukee Family Feels Blood Shortage Uncertainty
If you are able to donate blood, please consider saving a life… or three! Those on the receiving end of your selfless gift appreciate and need you. Many of our…
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Transfusional iron overload MUST be properly treated and monitored in all transfusion-dependent patients. While much can be learned from other transfusion-dependent anemias, iron overload in DBA patients has some specific implications…
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It’s always exciting to see Diamond Blackfan Anemia research as the topic of the ASH plenary paper in the respected publication, Blood. Congratulations and thank you to our European colleagues…
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DBA Doctors/Researchers Are “Doing Their DBA Thing”
Some of our favorite DBA doctors/researchers are “doing their DBA thing” today and tomorrow in Sanquin, Amsterdam. After 3 long years, we are ready and eager to resume DBA meetings!…
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This one is for the science lovers out there! We love research. https://www.nature.com/articles/s41421-022-00389-z.pdf…
Read MoreNon-profit Finds Housing for Patient’s Family
In December, we congratulated Harvey Lodish, Ph.D. when he was awarded The American Society of Hematology’s (ASH) Wallace H. Coulter Award for Lifetime Achievement in Hematology. The Diamond Blackfan Anemia…
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A Message From Dr. Vijay Sankaran
This month, the Diamond Blackfan Anemia Foundation (DBAF) received a heartfelt letter from Vijay G. Sankaran, M.D., Ph.D. Vijay is the Lodish Family Chair in the Division of Hematology/Oncology, Boston…
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Senthil Bhoopalan, PhD, Receives ASH Abstract Achievement Award
Congratulations to Senthil Bhoopalan, MBBS, PhD, FAAP!! We are grateful for the work from the laboratory of Mitchell Weiss, MD, PhD, Department of Hematology chair, at St. Jude Children’s Research…
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Congratulations, Dr. Adrianna Vlachos – Expertscape World Expert in Bone Marrow Failure Disorders
Please join us as we congratulate Dr. Adrianna Vlachos, Director of the Diamond Blackfan Anemia Registry (DBAR) of North America, for being recognized as an Expertscape World Expert in Bone…
Read MoreWe love research! Another paper published! This time from our dynamic research team in Sweden led by Johan Flygare, PhD. Many thanks for their continued commitment to Diamond Blackfan Anemia…
Read MoreFDA, NIH, and 15 Private Organizations Join Forces to Increase Effective Gene Therapies for Rare Diseases
Interesting Read… FDA News Release: “The U.S. Food and Drug Administration, the National Institutes of Health, 10 pharmaceutical companies and five non-profit organizations have partnered to accelerate development of gene…
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Vijay Sankaran, M.D., PhD (DBA Superhero) Wins 2021 Blavatnik Therapeutics Challenge Award
Exciting news to share! Congratulations to (DBA Superhero) Vijay Sankaran, M.D., PhD, Harvard Medical School associate professor of pediatrics at Boston Children’s Hospital for winning a 2021 Blavatnik Therapeutics Challenge…
Read MoreClinical Trial Opportunity
We are pleased to share and update information regarding the clinical trial entitled, “Phase I/II, Open-Label Study to Determine Safety of Trifluoperazine (TFP) in Adults with Red Blood Cell Transfusion-Dependent…
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Lodish Receives Lifetime Achievement Award
Congratulations to Dr. Harvey Lodish! The American Society of Hematology (ASH), honored Whitehead Institute Founding Member, Harvey Lodish, Ph.D., with its Wallace H. Coulter Award for Lifetime Achievement in Hematology.…
Read MoreIn June 2021, a “Special Report” entitled, Colorectal cancer screening and surveillance strategy for patients with Diamond Blackfan anemia: Preliminary recommendations from the Diamond Blackfan Anemia Registry was published in…
Read MoreDBAF Funds Research, “Uncoupling Ribosomal Protein and GATA1 Biology in DBA”, with Support of Friends of DBA and DBA Canada
The Diamond Blackfan Anemia Foundation with the support of Friends of DBA and DBA Canada awarded $60,000 to Dr. John Crispino, St. Jude Children’s Research Hospital, Memphis, TN, and Dr.…
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Happy Retirement to one of the very, very best! The Diamond Blackfan Anemia Foundation, along with the entire DBA Community, will forever be grateful for the contributions Dr. Blanche Alter…
Read MoreFor over two decades, the Diamond Blackfan Anemia Foundation has proudly supported the dedicated team of DBA researchers in Sweden. A big THANK YOU to our fundraising families, monthly donors,…
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So much to LOVE! “The lack of a cure or a sustainable long-term solution for people with DBA, like Lindsay, is what inspired hematologist Vijay Sankaran, MD, PhD, to begin experimenting…
Read MoreCOVID-19 & Vaccine Updates from the DBAR
Many thanks to the DBAR team for taking the time to answer our patients’ and families’ questions regarding COVID-19 and the vaccines. We appreciate Dr. Adrianna Vlachos and Dr. Michelle…
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The entire DBA Community mourns the death of a brilliant, amazing, caring, wonderful man who was a prominent DBA researcher. We are deeply saddened by the death of our respected…
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Virtual Research Opportunity at Camp Zon
We are happy to share this awesome opportunity for high school or rising college freshmen 16 years of age and older residing in Massachusetts interested in blood cell development under…
Read MoreSingle-cell Analysis of Erythropoiesis in Rpl11 Haploinsufficient Mice Reveals Insight into the Pathogenesis of Diamond–Blackfan Anemia
We love research and we love recently published papers by researchers we fund! Congratulations and many thanks to Dr. Janis Abkowitz and her colleagues at the University of Washington for…
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Benjamin L. Ebert, MD, PhD Awarded Sjöberg Prize 2021
Congratulations to Benjamin L. Ebert, MD, PhD, Harvard University and Dana-Farber Cancer Institute, Boston, MA! Dr. Ebert was awarded the $ 1 million Sjöberg Prize 2021 for his research and…
Read MoreThe Diamond Blackfan Anemia Foundation is feeling hopeful and proud. It is a monumental Monday when research progress is published and it is a magnificent Monday knowing that we have…
Read MoreResearch on “Harnessing RNA Activation to Treat Diamond Blackfan Anemia” Funded by DBAF
Dr. Anna Aspesi, Ph.D., Dept. Health Sciences, of Novara, Italy, was awarded a $25,000 grant for the research project entitled, “Harnessing RNA activation to treat Diamond Blackfan anemia”. Most cases…
Read MoreDBAF Continues Support to Dr. Colin Sieff’s Project Entitled, “Developmental Erythropoiesis in a New Murine Model of Diamond Blackfan Anemia”
The DBAF awarded $10,000 to Dr. Colin Sieff, MB, BCh, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, Boston Children’s Hospital, for interim support to maintain the mouse model characterized as…
Read MoreCOVID-19 and Bone Marrow Transplant Recipients
A paper entitled, “Clinical characteristics and outcomes of COVID-19 in haematopoietic stem-cell transplantation recipients: an observational cohort study” was published last week. While there is still much to learn and…
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Congratulations, Dr. Mohan Narla, Recipient of the 2020 Walter H. Coulter Award of Lifetime Achievement in Hematology
The Diamond Blackfan Anemia Foundation congratulates Dr. Mohan Narla, the recipient of the 2020 Walter H. Coulter Award for Lifetime Achievement in Hematology. Dr. Narla has been, and continues to…
Read MoreDBAF Funds the Diamond Blackfan Anemia Registry (DBAR) and the Feinstein Institute for Medical Research
The Diamond Blackfan Anemia Foundation is pleased to support the Diamond Blackfan Anemia Registry (DBAR) and the Feinstein Institute for Medical Research, with $113,000 for the project entitled, “A Vital…
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DBAF and DBAR are Updating Records
ATTN: DBA PATIENTS AND FAMILIES: The Diamond Blackfan Anemia Foundation (DBAF) and the Diamond Blackfan Anemia Registry (DBAR) are updating our records. Of course, we are not allowed to share…
Read MoreDBAF Funds Project Entitled “The Inflammasome: A Therapeutic Option for Diamond-Blackfan Anemia”
The DBAF has awarded $30,000 to Victoriano Mulero, from the University of Murcia, Spain, UM Department of Cellular Biology and Histology for the project entitled “The inflammasome: a therapeutic option…
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Your donations help support DBA research and make a difference! The DBA Foundation has proudly supported the important work being conducted by Drs. Kathleen Sakamoto and Mark Wilkes of Stanford.…
Read MoreThe Diamond Blackfan Anemia Foundation awarded $15,000 to Dr. Steve Ellis, Ph.D. at the University of Louisville to continue providing experimental services to clinicians and scientists worldwide in need of…
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Austin Jackson Saved His Sister’s Life a Year Before Becoming a Dolphins 1st-round Pick
Heartfelt CONGRATULATIONS to Austin Jackson and his entire family! The DBA Community celebrates all the joyous successes and accomplishments of this DBA family. So much to be grateful for! https://www.sbnation.com/…/austin-jackson-nfl-draft…
Read MoreDr. Adrianna Vlachos Answers Your COVID-19 Questions
On Saturday, April 11, the Diamond Blackfan Anemia Foundation (DBAF) welcomed Dr. Adrianna Vlachos, Director of the North American DBA Registry (DBAR), to address COVID-19 concerns of the DBA Community.…
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COVID-19 Updates from the CDC
From the CDC… “If you are at higher risk of getting very sick from COVID-19, you should: *Stock up on supplies. *Take everyday precautions to keep space between yourself and…
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DBA Fundraiser Tees by Brandi
We are always so grateful when our families support our Mission by organizing and hosting fundraisers. Many thanks to this very talented DBA mom. Her words, sentiment, and heart are…
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Research Reveals Promising New Avenues for Anemia Treatment
We are so grateful to have Lionel Blanc, Ph.D. on our DBA team! Congratulations and thank you to all who contributed to this promising work. https://feinstein.northwell.edu/news/the-latest/research-reveals-promising-new-avenues-…
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DBA Hoodies and Tees by Dickson Family
Going… Going… GONE IN JUST A FEW HOURS! Last chance to show your support and spread awareness by wearing and sharing these beautifully designed hoodies and tees created by one…
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DBAF at the 61st ASH (American Society of Hematology) Annual Meeting
Good news and not-so-good news from our booth at ASH. The not-so-good news is we don’t have many photos to share. The really good news is that we have been…
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A Potential Diamond-Blackfan Anemia Treatment Swims Into View
We are grateful for the commitment and collaborative efforts of our “DBA Docs” from Boston and New York City. Exciting news! http://discoveries.childrenshospital.org/diamond…/
Read MoreMeeting for Adults with DBA
ATTN: ADULTS WITH DBA Time is ticking… and space is dwindling! Here’s the link to register for the Meeting for Adults with DBA. If you have a question or comment,…
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Dowies Full of Hope after DBA Camp
The Diamond Blackfan Anemia Foundation hosts a family meeting every other year at Camp Sunshine at Sebago Lake. The information, friendship, and support have proven to be life-changing and life-saving.…
Read MoreMore Research Funded…”Beyond the Erythron, Skeletal Defects in Diamond Blackfan Anemia”
The DBAF awarded a grant for $50,000 to Dr. Lionel Blanc, PhD, who is at the Feinstein Institute for Medical Research in New York City, with co-investigator Dr. Jeffrey Lipton.…
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It is so exciting to see our friend, Nancy Cincotta, LCSW, MSW, MPhil be recognized for her outstanding work! Nancy and Camp Sunshine hold a very dear place in the…
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Going…Going… Almost Gone!
Last Chance to order and show your support. (Short and long-sleeved shirts are available in a variety of colors.) Many thanks to the Smith Family for creating and launching a…
Read MoreRecently published work from our UK colleagues. Many thanks to Dr. Josu de la Fuente and his team for their continued interest and hard work. https://www.ncbi.nlm.nih.gov/pubmed/30980390
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Camp Sunshine 2019!
Summer is almost here! Space is limited! If you are interested in attending, please apply asap. The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 12th family retreat.…
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Kathleen Sakamoto M.D., Ph.D., a professor in the School of Medicine at Stanford University, received a grant for $62,409 with support from DBA Canada and Friends of DBA. The project…
Read MoreSteroids Boost Red Cell Production. Is There a Better Way?
More research from our DBA researchers in Boston. Thank you for your continuing work and dedication. (And many thanks to those who support their efforts!) https://biology.mit.edu/pumping-up-red-blood-cell-production/
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Transplant-related Housing Relief
Often, transplant-related housing expenses are an enormous burden on patients and their families. Here’s some relief. From the Bone Marrow & Cancer Foundation: The Bone Marrow & Cancer Foundation is…
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Congratulations Lionel Blanc, PhD and Collaborators!
WHOO HOO!!! So proud and grateful to partner with our dedicated doctors and researchers. Congratulations Lionel Blanc, PhD and collaborators! https://www.prnewswire.com/…/blood-disorder-research…
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Antibody Could Increase Cure Rate for Blood, Immune Disorders
An interesting article on research and advances in stem cell transplantation. “An antibody to a protein on blood-forming stem cells may allow bone marrow transplants without the need for chemotherapy…
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Research… it’s a beautiful thing. We are so grateful for more research. Many thanks to all who help make it happen. http://www.bloodjournal.org/…/01/30/blood-2018-09-875674
Read MoreGenetic Landscape of DBA
Often when a paper is published in a major medical journal, there is a fee to access the article. Recently, a comprehensive paper detailing the “Genetic Landscape of DBA” was…
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It’s our last day here at the ASH (American Society of Hematology) Meeting and it is certain to be an exciting one. Later today, Jun Chen MD, PhD, a postdoc…
Read MoreDBAF with the Support of DBAC and Friends of DBA Awarded Grant for Research “Identifying Associations Between DBA and Genomic Variations in Ribosomal DNA.”
The DBAF has awarded $54,754 with support from DBAC and from Friends of DBA to Dr. Scott C. Blanchard, PhD, from Weill Cornell Medicine for the project entitled “Identifying associations…
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The Diamond Blackfan Anemia Foundation (DBAF), along with our colleagues from Diamond Blackfan Anemia Canada, is proud to represent DBA at the 60th American Society of Hematology (ASH) Annual Meeting…
Read MorePharmacological Inhibition of Nlk (Nemo-like Kinase) Rescues Erythropoietic Defects in Pre-Clinical Models of Diamond Blackfan Anemia
It takes more than wishing and hoping… it takes research! Every DBA research project adds another piece to the “better treatment options” and “working towards a cure” puzzles. We are…
Read MoreFeeling grateful for the many doctors and researchers dedicated to understanding and treating Diamond Blackfan Anemia. https://f1000research.com/articles/7-1350/v1?src=rss
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Another interesting read: http://www.sci-news.com/medicine/enzymes-turn-type-a-b-blood-into-universal-type-o-06324.html
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CRISPR-SKIP: Programmable Gene Splicing with Single Base Editors
We love research…We love science! https://genomebiology.biomedcentral.com/…/s13059-018…
Read MoreA Functional Assay for the Clinical Annotation of Genetic Variants of Uncertain Significance in Diamond–Blackfan Anemia
Thank you DBA researchers and thank you Diamond Blackfan Anemia Foundation, supporters. Your donations to the DBAF allow us to continue funding important research initiatives. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6055729/
Read MoreThe Genetic Landscape of Diamond-Blackfan Anemia
It is exciting to read this comprehensive, up-to-date paper detailing the genetics of DBA. (It’s also pretty exciting to see the DBA Foundation acknowledged as a funding source. THANKS, donors!)…
Read MoreDBA presentation at NIH Grand Rounds. Many thanks to Dr. Bodine for his continued commitment to DBA and our families. And… THANK YOU to the families that have participated in…
Read MoreUsing Cells as Medicine – Alumni Reunion Symposium Showcases Advances in Regenerative Medicine
We are grateful for the continued commitment and DBA research from Harvard Medical School, Boston Children’s and all our Boston colleagues. https://hms.harvard.edu/news/using-cells-medicine
Read MoreRecurring Mutations in RPL15 Are Linked to Hydrops Fetalis and Treatment Independence in Diamond-Blackfan Anemia
Here is a recently published article authored by our Euro DBA consortium colleagues. http://www.haematologica.org/content/103/6/949
Read MoreA Report of the Diamond Blackfan Anemia Registry
Always pleased to share recently published research articles… and always grateful for dedicated researchers and for our supporters. Your generosity allows us to be a funding source. Thank you! Increased…
Read MoreBetter Matching for Blood Transfusions
An interesting read… https://www.mdedge.com/hematology-oncology/article/184945/blood-banking/better-matching-blood-transfusions
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We congratulate Dr. Stuart H. Orkin, from Boston Children’s Hospital, Dana-Farber Cancer Institute and Harvard Medical School for being awarded the 2018 Mechthild Esser Nemmers Prize in Medical Science at…
Read MoreResponse to People Magazine’s Article
As the Executive Director of the Diamond Blackfan Anemia Foundation (DBAF), it is both my professional responsibility and personal passion to fulfill the DBAF’s Mission Statement: The mission of the…
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New Role for Ribosomes
The Diamond Blackfan Anemia Foundation is extremely grateful for the commitment of Harvard Medical School and Boston Children’s Hospital scientists and we are proud to support their research projects and…
Read MoreThe 15th Diamond Blackfan Anemia International Consensus Conference was held March 10-12 at the Ritz-Carlton Hotel in downtown Atlanta, Georgia. The overriding goal of this and past ICC meetings has…
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Congratulations! Drukier Prize in Children’s Health Research Awarded to Harvard Hematologist
The Diamond Blackfan Anemia Foundation (DBAF) applauds and congratulates, Dr. Vijay Sankaran on an honor well deserved! The DBAF has proudly provided funding for Dr. Sankaran’s DBA research and we…
Read MoreDBAF with the Support of DBAC and Friends of DBA Fund Research, “Targeted Corticosteroid Therapy for DBA.”
Johan Flygare, M.D., Ph.D. of Lund University in Sweden was awarded $75,000, with support from DBA Canada and Friends of DBA, for his project entitled, “Targeted corticosteroid therapy for DBA.”…
Read MoreDBAF Funds Our Amazing Research Director, Dr. Steve Ellis, Ph. D
The DBAF awarded a grant for $15,000 to Dr. Steve Ellis, Ph.D. at the University of Louisville to continue to provide experimental services to clinicians and scientists worldwide in need…
Read MoreDBAF Funds Research Entitled, “The Contribution of Heme Excess to Macrocytic Anemia in Murine Models of DBA.”
Janis Abkowitz. M.D., from the University of Washington, Seattle, WA was awarded $63,120 to continue her project entitled, “The contribution of heme excess to macrocytic anemia in murine models of…
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DBA Swag by David Voltz
Feeling a little chilly? These sweatshirts and hoodies will help you feel warm and fuzzy on the inside and out! Thank you David Voltz for organizing this 6 item fundraiser…
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Rest Peacefully, Dr. Paw, You Will Be Missed
The DBA Community is deeply saddened by the loss of a brilliant scientist, physician, researcher, teacher, mentor… a remarkable man. Dr. Barry Paw is remembered for his wealth of knowledge,…
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DBAF at ASH 2017
Two days down and one more to go! The Diamond Blackfan Anemia Foundation and Diamond Blackfan Anemia Canada joined forces to welcome doctors and researchers from around the world to…
Read MoreDBAF Awards a Grant to the Project Entitled, “The Problem of Interpreting Missense Mutations of DBA Genes: Proposal of a New Functional Assay.”
A DBAF grant of $20,000 was awarded to Dr. Anna Aspesi, a junior investigator who for the past 14 years has been working in various capacities (graduate student, postdoctoral fellow)…
Read MoreDBAF Supports the 2017 GATA Meeting
The DBAF supported the 2017 GATA Meeting with a $3500 donation. The scientific program includes talks by more than 30 speakers who are international experts in the biology of GATA…
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New York Blood Center’s Dr. Mohandas Narla Awarded Program Project Grant by the National Institute of Diabetes and Digestive and Kidney Diseases
Congratulations and many thanks to Dr. Mohandas Narla for his continued interest in Diamond Blackfan Anemia. http://markets.businessinsider.com/…/New-York-Blood…
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Congratulations and Best Wishes to Dr. Shubhranshu Debnath!
Dr. Shubhransh Debnath recently defended his thesis entitled “Development of novel therapies for Diamond Blackfan anemia.” We sincerely thank Dr. Debnath and his great mentors for their interest and hard…
Read MoreMore encouraging research news from scientists at the University of Pennsylvania and Technical University of Dresden. https://penntoday.upenn.edu/news/bone-marrow-protein-may-be-target-improving-stem-cell-transplants
Read MoreHow Immature Cells Grow Up to Be Red Blood Cells
More research! Thanks to our donors, the DBAF proudly provided funding for this project. https://www.sciencedaily.com/rel…/2017/08/170818123537.htm
Read MoreCamp Sunshine 2017 Recap
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…
Read MoreInteresting new research unveils a viral biomarker that could allow clinicians to assess patients’ risk of enteric GvHD. UCSF.EDU Gut Viruses Tied to Potentially Deadly Complication of Bone Marrow Transplant. A…
Read MoreA DBAF grant of $56,021 was awarded to Vijay G. Sankaran, M.D., Ph.D., Harvard Medical School, Broad Institute of MIT and Harvard, Boston Children’s Hospital, Boston, MA for the project,…
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Ribosomes, which make proteins, are startlingly variable in their composition and associations. This variability confers on them the ability to regulate genes, confounding previous ideas, Stanford researchers say. The more…
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Feeling grateful for scientific research! Red Blood Cell Technology at Rubius Therapeutics article in the Boston Globe by Robert Weisman.
Read MoreVitamin A Supplementation and Bone Marrow Transplant
Researchers at Cincinnati Children’s Hospital Medical Center are studying Vitamin A supplementation may improve outcomes after pediatric bone marrow transplant . “Lower levels of vitamin A promoted gastrointestinal graft-versus-host disease…
Read MoreThe ideas, innovation, and imagination behind the research are mind-boggling, hopeful, and appreciated! http://jacobsschool.ucsd.edu/…/news…/release.sfe
Read MoreMany thanks to all seeking answers for Diamond Blackfan Anemia. Let the research continue… http://www.bloodjournal.org/…/03/blood-2017-01-760462…
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So much to learn and so grateful for the researchers and doctors working diligently and passionately to understand even the rarest cases of Diamond Blackfan Anemia. The Harvard Gazette –…
Read MoreSurprising New Role for Lungs: Making Blood
Interesting video and article from UCSF … Surprising New Role for Lungs: Making Blood – Cells in Mouse Lungs Produce Most Blood Platelets and Can Replenish Blood-Making Cells in Bone…
Read MoreHallie’s Heroes… Shake It Off
It’s FINALLY HERE!! Hallie’s Heroes and DKMS US present, Hallie Bea! Watch #TeamHallieBea Shake It Off to raise awareness for Diamond Blackfan Anemia and the need for more people to…
Read MoreDBA Funds Research to Identify New Therapeutics for DBA
DBAF funded Barry H. Paw’s, M.D., Ph.D., Harvard Medical School, Brigham and Women’s Hospital, Boston Children’s Hospital, and Dana-Farber Cancer Institute, Boston, MA research project entitled, “Therapeutic targeting of protein…
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Thank You, Researchers! Thank You, Donors!
We LOVE supporting research and we LOVE reading about progress. An article was published today in “Science Translational Medicine” about the work of researchers at Boston Children’s Hospital’s Stem Cell…
Read MoreWatch Our Favorite Tiny Dancer Perform the Nutcracker with the New York City Ballet
Here are a few of our favorite things! Our favorite dew drop – Audrey Our favorite television personality – Rachael Ray Our favorite ballet – “The Nutcracker” performed by the…
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More Research = More Hope!
Many thanks to Dr. Sakamoto and her team for their continued hard work. Dr. Sakamoto explains signaling pathways in the pathogenesis of diamond blackfan anemia
Read MoreAudrey Nethery in Upcoming Music Video “Life’s Beautiful”
So BEAUTIFUL… a must see. Grammy Award Winner Steven Battey, founder of Singing for Superheroes, joins Audrey to spread a message of hope with “Life’s Beautiful” music video this holiday…
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58th Annual American Society of Hematology Meeting
We’re getting ready in San Diego! We would love to meet up with all the DBA researchers and clinicians attending the 58th Annual ASH (American Society of Hematology) Meeting in…
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Tackling Blood Diseases, Immune Disorders
An interesting (and promising) article…”Startup Magenta Therapeutics licenses technologies from Harvard, MGH, and Boston Children’s that could help transform treatment.” https://news.harvard.edu/gazette/story/2016/11/tackling-blood-diseases-immune-disorders/
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Teen With Blood Disorder Reunites With Family Dogs After Spending a Year in Hospital
A heartwarming story about a teen with DBA – the amazing, strong, sweet, sassy, inspirational Emmy, and her incredible mom and family. Keep up the great work, Emmy https://gma.yahoo.com/teen-blood-disorder-reunites-family…
Read MoreCongratulations to the DBAR Team at Cohen Children’s Medical Center
So excited to announce that our DBA heroes are now officially being recognized as Rare Disease Heroes! Congratulations to the DBAR Team at Cohen Children’s Medical Center – Adrianna Vlachos,…
Read MoreGlobal Genes Announces Actors, Pop Stars, and Special Performances For the Fifth Annual Tribute to Champions of Hope
Audrey and Diamond Blackfan Anemia are headliners at this year’s 5th Annual Tribute to Champions of Hope! Shine on, Audrey, Shine on! http://www.prnewswire.com/…/global-genes-announces…
Read MoreDBAF Funds Research for the Project Entitled “The Contribution of Heme Excess to Macrocytic Anemia in Murine Models of DBA”
Janis Abkowitz. M.D., from the University of Washington, Seattle, WA was awarded $60,238 for the project entitled, “The contribution of heme excess to macrocytic anemia in murine models of DBA.”…
Read MoreThe 14th Diamond Blackfan Anemia International Consensus Conference was a huge success. It is a privilege to continue the meeting founded and previously sponsored by Marie Arturi and the Daniella Maria…
Read More“Life with DBA” by Laurie Shore, DBA speaker at the 14th DBA International Consensus Conference
When I was diagnosed with Diamond Blackfan Anemia back in 1970, I was lucky enough to have a doctor that knew about DBA and knew what he was dealing with. I…
Read MoreWelcome and thank you. Christopher Vroman’s Story shared at the 14th DBA International Consensus Conference
It means more than you could ever imagine to myself, my brother and to the rest of my family that you have come here to collaborate with great minds in…
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Hematopoietic Stem Cell Transplantation in Immunocompetent Hosts Without Radiation or Chemotherapy
Wow! So encouraging to see progress made in all areas of science, including bone marrow transplantation. http://stm.sciencemag.org/content/8/351/351ra105
Read MoreDBAF Funds Research on Understanding the Role of the FLVCR1 Heme Exporter and Splicing Regulators
DBAF has awarded Yigal Dror, M.D., The Hospital for Sick Children, Toronto, Canada, a $55,000 grant for the research project entitled, “Understanding the role of the FLVCR1 heme exporter and…
Read MoreDBAF Funds Research for “Identifying Small Molecule Compounds to Disrupt Ribosomal Stress Signaling”
An award of $25,000 was given to Michal Hetman, M.D., Ph.D., of the University of Louisville, Kentucky for his project, “Identifying Small Molecule Compounds to Disrupt Ribosomal Stress Signaling.” This…
Read MoreSelena Gomez Adorably Dances With 7-Year-Old Audrey Nethery, Who is Battling Rare Disease
Audrey and Selena – We love you both like a love song, baby! http://www.etonline.com/…/191737_selena_gomez_adorably…/
Read MoreDBAF Awards Grant for GATA1 Research
A DBAF grant of $50,000 was awarded to John Strouboulis, Ph.D., Institute of Molecular Biology and Biotechnology, Foundation of Research and Technology Hellas, Greece for his project, “Differential characterization of…
Read MoreErythrocyte Glutathione Is a Novel Biomarker of Diamond-Blackfan Anemia – PubMed- NCBI
Another published paper: http://www.ncbi.nlm.nih.gov/pubmed/27282564
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Interesting research from our friends at Lund University and Dr. Johan Flygare in Sweden. http://www.news-medical.net/…/Lund-researchers-identify…
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Humans of New York – Dr. Farid Boulad
Dr. Farid Boulad has cared for many of our patients and families. His medical expertise, along with his compassion, insight, and heart are evident in his Humans of New York…
Read MoreAudrey Nethery on Rachel Ray
With thanks to Audrey’s dad, here is the entire segment of two of our favorite young ladies… Audrey and Rachael. Thank you Audrey for your indomitable spirit and for making…
Read MoreDBAF provides Sponsorship for Conference on Ribosome Synthesis
By: Steven R. Ellis, Ph.D. Dateline: August 21st 2015, Brussels Belgium Ding…………….that’s odd, it is 3:00AM back in the US: who would be e-mailing me now? Ah, it’s Jeff Lipton;…
Read MoreA Clinician/Researcher’s Perspective… Camp Sunshine 2015
By Vijay G. Sankaran, M.D., Ph.D. As both a pediatric hematologist caring for patients with blood disorders and a scientist working to improve our understanding of the genetic basis of…
Read MoreRibosome research
Dateline: August 21st 2015, Brussels Belgium Ding…………….that’s odd, it is 3:00AM back in the US: who would be e-mailing me now? Ah, it’s Jeff Lipton; who happens to be sitting…
Read MoreA 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…
Read MoreDBAF and DBAC Fund Continuing Drug Development Research
The Diamond Blackfan Anemia Foundation (DBAF) and Diamond Blackfan Anemia Canada (DBAC) are joining forces once again to fund Johan Flygare, M.D., Ph.D.’s project entitled, “A novel group of kinase…
Read MoreDBAF Funds Our “Indispensable Steve”
The Diamond Blackfan Anemia Foundation (DBAF) is pleased to support the hard work and research efforts of Steven R. Ellis, Ph.D. at the University of Louisville. Dr. Steve Ellis’ professional and personal commitment…
Read MoreDBAF & DBA-UK Fund Another Researcher New to the DBA Field
The Diamond Blackfan Anemia Foundation (DBAF), in collaboration with DBA-UK, is pleased to announce funding for a project entitled, “Ribosome biogenesis, cellular signaling pathways and Diamond Blackfan anemia.” A $41,810…
Read MoreDBAF Supports Ribosome Meeting
The Diamond Blackfan Anemia Foundation (DBAF) is proud to support the Ribosome Synthesis Meeting held tri-annually. This international meeting, celebrating its 10th anniversary, brings together investigators from all over the world to focus…
Read MoreDBAF Funds GATA1 Research
The Diamond Blackfan Anemia Foundation is proud to support the research of Dr. Shai Izraeli, Professor in the Department of Human Molecular Genetics and Biochemistry at Tel Aviv University and…
Read MoreDBA Sweatshirt Available
DBA Awareness Sweatshirts are available for a very limited time. Stay warm and cozy this winter in your DBA hoodie. Many thanks to David and Brandi Voltz of Bonaire, GA…
Read More“DBA: Building Global Bridges” Euro-DBA consortium
ANNOUNCEMENT: “DBA: Building Global Bridges”: An interdisciplinary symposium to facilitate networking between clinicians, scientists, and patients worldwide. An international meeting on Diamond-Blackfan anemia (DBA), a rare inherited blood disease will take…
Read MoreDBAF & DBAC Fund Drug Screening Project
The Diamond Blackfan Anemia Foundation (DBAF), in partnership with DBA Canada (DBAC), is proud to provide a $25,000 grant to Dr. David Bodine for his project, Assay Development and Preliminary Screening…
Read MoreDBAF Board Member Appointed As Reviewer
Congress has again made funds available to the Department of Defense (DOD) for the Bone Marrow Failure Research Program (BMFRP). The DOD, in turn, is making funds available to scientists…
Read MoreUPDATE on Dr. Lodish’s Project DBAF and DBAC Provide $95,000
In April 2014 when the DBAF awarded Dr. Harvey Lodish $21,281, the intent was to fill a gap for a few months until Dr. Lodish received government money. Unfortunately, Dr. Lodish…
Read MoreDBAF Funds Another Research Project
The Diamond Blackfan Anemia Foundation is proud to support the very important work of Vijay G. Sankaran, M.D., Ph.D. of Boston Children’s Hospital. The DBAF has provided $36,000 to fund…
Read MoreDBAF Funds New Research
The Diamond Blackfan Anemia Foundation is pleased to announce the funding of another exciting research project. A grant for $35,000 was awarded to Daniel Finley, Ph.D. for his project entitled,…
Read MoreDBAF Provides Gap Funding to Keep Project Going
The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce the funding of another important research project. Through the dedication, hard work, and generosity of our families, friends, and supporters,…
Read MoreSummary of the 2014 International Consensus Conference from DBAF’s Research Director, Steven Ellis, PhD:
The 13th Diamond Blackfan Anemia International Consensus Conference was held March 8th through the 10th at the Ritz-Carlton Hotel in downtown Atlanta, Georgia. This year’s conference saw a record number…
Read MoreDBA Gene Therapy Research Funded by DBAF & DBAC
The Diamond Blackfan Anemia Foundation is proud to partner with DBA Canada to fund a novel gene therapy research proposal from Dr. Johnson Liu, MD at The Feinstein Institute for…
Read MoreDBAF & DBAC Fund Another Important Research Project
The DBA Foundation is excited to announce the funding of Dr. George Thomas’ research project entitled, “The role of p53 in mediating the anemic response in DBA patients with defects…
Read MoreDBAF & DBAC at ASH 2013
The Diamond Blackfan Anemia Foundation (DBAF) and Diamond Blackfan Canada (DBAC) proudly represented DBA at the 55th American Society of Hematology (ASH) Annual Meeting and Exposition held in New Orleans,…
Read MoreWe are so proud of Dr. Johan Flygare and bursting with excitement and gratitude! The DBAF has enthusiastically funded numerous of his earlier DBA research projects and this young researcher’s…
Read MoreDBAF Funds “Our Rare Treasure”
The Diamond Blackfan Anemia Foundation (DBAF) is pleased to support the hard work and research efforts of Steven R. Ellis, Ph.D. at the University of Louisville. Dr. Steve Ellis’ professional…
Read MoreDBAF Funds a Novel Idea in Understanding DBA
The Diamond Blackfan Anemia Foundation (DBAF) is pleased to announce the funding of another exciting research project. Dr. Jingping Ge, MD, PhD was awarded a $30,000 grant for her project…
Read MoreExciting New GATA1 Research Funded by DBAF and DBAC
The Diamond Blackfan Anemia Foundation (DBAF) and Diamond Blackfan Anemia Canada (DBAC) have once again joined forces to fund a very exciting research project. Dr. John Crispino, PhD of Northwestern…
Read MoreDear DBA Patients and Families: We are pleased to announce the opening of: “The Use of Novel Therapies to Reconstitute Blood Cell Production and Promote Organ Performance, using Bone Marrow…
Read MoreDr. Jeffrey Lipton Honored at National Cancer Center’s 60th Anniversary Gala and Nobility in Science Award Presentation
Please join us in congratulating one of DBA’s true heroes, Jeffrey M. Lipton, MD, PhD, Director, Hematology/Oncology and Stem Cell Transplantation at Cohen Children’s Medical Center of New York. On…
Read MoreDr. Mitchell Weiss, Dr. Monica Bessler, Dr. Philip Mason and their entire team at The Children’s Hospital of Philadelphia have shown that skin cells from patients with DBA can be…
Read MoreDr. Harvey Lodish of the Whitehead Institute published new findings identifying a protein that is the target of prednisone or prednisolone, the drugs that are used to increase red blood…
Read MoreJuly 3, 2013 Houlton, Maine Contact and Information: https://www.facebook.com/MiracleMileRace4Research
Read MoreKevin J. Gately Foundation Golf Outing
July 15, 2013 Black Swan Country Club Georgetown, MA Contact: KJGFoundation@gmail.com http://kjgfoundation.org/events.htm
Read MoreFriends of DBAF Golf Outing & Silent Auction
8th annual Friends of DBA golf Outing Monday, September 15, 2014 Fox Meadow Country Club Medina, Ohio For more information and registration: http://www.friendsofdba.org/
Read MoreCongratulations to Stuart H. Orkin, MD
Congratulations to Stuart H. Orkin, MD, chairman of the department of pediatric oncology at Dana-Farber/Children’s Hospital Cancer Center. Dr. Orkin was recently awarded the Jessie Stevenson Kovalenko Medal from the…
Read MoreCamp Sunshine Applications Are Available Now!
The Diamond Blackfan Anemia Foundation (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…
Read MoreAnnouncement from the Diamond Blackfan Anemia Registry (DBAR)
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…
Read MoreASH 2012 Was A Success!
The Diamond Blackfan Anemia Foundation (DBAF) proudly represented DBA at the 54th American Society of Hematology (ASH) Annual Meeting and Exposition held in Atlanta, GA from Dec. 8 – 11,…
Read MoreThe DBAF Welcomes a New Board Member
The Diamond Blackfan Anemia Foundation (DBAF) would like to announce the addition of Anthony Marchese to the Board of Directors. Anthony brings to the Board a wealth of professional experience,…
Read MoreDBAF Wins $100,000 Grant from Chase Community Giving Program
And the winner of the last $100,000 spot in the Chase Community Giving Program is…. overcoming a deficit of 1617 votes in the last 12 hours is…. couldn’t have done…
Read MoreRolling for Robert in Support of DBA
Rolling for Robert in Support of DBA October 27, 2012 5:30 – 7:30pm Scooter’s Rolling Place Mississauga, Ontario Contact: Paula Bourgeois pizster27@gmail.com For more information, please click here. Thanks…
Read MoreJump Day for DBA
Jump Day for DBA October 21, 2012 1:00 – 5:00pm Jump Tupelo Tupelo, MS Contact: Victoria Boatman vjboatman@gmail.com For more information, please click here. Thank you Boatmans!
Read MoreKJG Golf Outing
KJG Golf Outing October 15, 2012 9:00am Shotgun Start Black Swan Country Club Georgetown, MA Contact: Sally Thompson Gately KJGFoundation@gmail.com For more information, go to www.kjgfoundation.org Many Thanks to the Gatelys!
Read MoreThanks to YOU…We Did it Again!
DBAF Funds More Research and a Research-rich Conference The DBA Foundation (DBAF) is proud to announce the funding of Dr. Fredrick Goldman’s research project entitled, Toward a cure for DBA: creation…
Read MoreAs part of the annual April Fool’s pancake breakfast at Tremont Center on Saturday, businesses and residents will be helping out a serious cause — helping to fund a bone-marrow…
Read MoreDr. Adrianna Vlachos, Pediatric Hematologist was awarded the Best Abstract in Epidemiology at The 2nd National Conference on Blood Disorders in Public Health held March 12-14, 2012. The abstract recognized…
Read MoreDBAF & DBAC Fund $125,225 Research Project
The DBA Foundation (DBAF) is proud to announce the funding of Dr. Adrianna Vlachos’ research project entitled, A Stategic Approach to Gene Discovery in DBA. We are pleased to fund this…
Read More2nd National Conference on Blood Disorders
The Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention; the Maternal and Child Health Bureau, Health Resources and Services Administration;…
Read More3 More Research Projects Funded!!!
We are pleased to announce the funding of Dr. Johan Flygare’s project titled: Identification of Genetic and Chemical Modifiers of Erythropoiesis in Diamond Blackfan Anemia. This project is significant for many…
Read MorePrintable Fact Sheets prepared by the CDC
DBA Brochure Blood Transfusion Therapy Congenital Anomalies in DBA Corticosteroids Chelation DBA, Genetics, and You DBA Siblings Stem Cell Transplant Resources
Read MoreStrongsville Teen Lives with Rare Disease.
Strongsville Patch. August 29,2011, by Gina Ragone. Click here to read the full article.
Read MoreMystery Diagnosis – Kylie Monica’s Miracle
Oprah Winfrey Network. Thank you Monicas for sharing your story and helping to spread the word about DBA!
Read MoreBoy with Rare Disease Inspires Donations of Blood and Kids’ Band-Aids. Liam Gorman, 6, Shows the Importance of Blood Drives and Cool Band Aids.
By MIKAELA CONLEY, ABC News Medical Unit. Six-year-old Liam Gorman inspired others to give colorful band aids and blood to help kids in need. Liam and his parents were overwhelmed…
Read More‘Freezin’ for a Reason’
The Item, The Banner. Click here to read the full article.
Read MoreAdrianna Vlachos and Ellen Muir Blood First Edition Paper, prepublished online July 22, 2010.
How I Treat Diamond Blackfan Anemia. Abstract Diamond Blackfan anemia is characterized by red cell failure, the presence of congenital anomalies, and cancer predisposition. In addition to being an inherited…
Read MoreWCSH6 News. Portland, Maine. Click here to read the full article.
Read MorePrincipal Investigator: Emanuela Tolosano, Co-Principal Investigator: Deborah Chiabrando This project is aimed at defining the role of the Feline Leukemia Virus, subgroup C, Receptor (FLVCR) in the pathogenesis of Diamond-Blackfan…
Read MoreDear DBA Patients and Families: We are pleased to announce the opening of the “Pilot Study of Lenalidomide (Revlimid) in Adult Patients with Red Blood Cell Transfusion-Dependent Anemia” at the…
Read MoreUpdate on Leucine Trial for DBA Patients
A Message from Ellen, DBA Nurse We need to find out how many are interested in the leucine trial so we can report back to the reviewers for funding. It…
Read MoreDBA Patients and the H1N1 Virus
Dear DBA Community, It cannot be stressed enough that every DBA patient has a different situation and response to illness. Please work with your hematologist, pediatrician or internist in deciding…
Read MoreYoung fundraiser dedicated to funding cure
By Ken Cleveland. The Item. Click here to read the full article.
Read MoreSomething quite rare and remarkable in Big Sky Country
By Betty Londergan. What Gives 365. Click here to read the full article.
Read MoreBlood Drive for Deliah
By Michael Moore. Missoulian Click here to read the full article.
Read MoreDelivering hope: Lauren has a rare genetic disease. On Friday, she welcomed a new sister whose cord blood could cure her. But it isn’t that simple.
We are happy to share with you our DBA Family’s personal story. Please note the medical information may not be entirely accurate and should not be used for diagnosis or…
Read MoreBoy with rare disease inspires blood donors
By Arlene Gross. North Shore of Long Island – Times Beacon Record.
Read MoreBy Scott Nethery. Click here to read the full article.
Read MoreTenacious toddler owes smile to donors.
Adelaide Advertiser, General News, Page 3. Click here to read the full article.
Read MoreA Tattoo of Pride and Hope
Our logo never looked so beautiful!! Shelly Marquer, an adult DBA patient with a real fear of needles, proudly and triumphantly displays her new tattoo. If you look closely, you…
Read MoreCongratulations to the Bell Family for being selected for ABC’s Extreme Makeover: Home Edition
Tucson, AZ – originally aired March 22nd 8:00pm. The episode is still available to watch online at http://abc.go.com/primetime/xtremehome On January 27, 2009, American Red Cross hero Lizzie Bell and her…
Read MoreColorado State University News Click here to read the full story.
Read MoreHospital hosts surprise blood drive
Queens Courier, By Jessica Lyons Read the full article here.
Read MoreMaggie’s Story
Click here to watch the video.
Read MoreDBA International Clinical Care Consensus Document (2008)
Through the coordination of international experts in DBA at the annual International Consensus Conference (ICC) sponsored by the Daniella Maria Arturi Foundation and Co-sponsored by the Diamond Blackfan Anemia Foundation…
Read MoreBlood drive to honor child; 5-year-old living with rare disorder.
By Priyanka Dayal TELEGRAM & GAZETTE STAFF Click here to read the full article.
Read MoreInternational Ribosome Synthesis Meeting funded in part by DBAF
DBAF is a proud co-sponsor of a Ribosome Synthesis Meeting held tri-annually. This meeting is International and brings together investigators from all over the world to focus on issues related…
Read MoreThanks to the support of our famiies and friends we were able to fund another worthwhile DBA research project. Dr. David M. Bodine from the NIH is being funded for…
Read MoreCongratulations Emily Devlin, B.A., ASH Merit Award Winner 2008
The American Society of Hematology recognized abstract presenters who received the highest ranking in their categories of undergraduate student, medical student, graduate student, resident physician, and postdoctoral fellow. Merit Award…
Read MoreThank you families and friends! DBAF funds more research
We would like to sincerely thank families and friends for your support and fundraising efforts. DBAF has recently been able to fund 3 research projects and a scientific conference. Because…
Read MoreThe ASH Mentor Award was established in 2006 to recognize hematologists who have excelled at mentoring trainees and colleagues. Those selected to receive the award are chosen because they have…
Read MoreLeucine Publication (2007)
Leucine is an amino acid that is available as a nutritional substance. It is sold over-the-counter in many nutritional supplements, in many combinations. For everyone’s knowledge, over-the-counter nutritional supplements are…
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