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    Archived pages: 46 . Archive date: 2012-10.

  • Title: Diamond Blackfan Anemia Foundation
    Descriptive info: .. Make a donation today.. Help to find a cure.. Gabriel 3 years old.. Navigation Bar.. Home.. DBA Foundation.. About DBA.. DBA News.. Research.. For Families.. Fundraising.. Links.. Downloadable Materials.. Donate.. Contact.. Andie 1 year old.. Quick Downloads.. DBA Foundation Brochure.. Click on the link above.. Feel free to make copies and distribute, as is only.. NEW - DBA Newsletter Spring 2012.. How I treat Diamond-Blackfan anemia by Adrianna Vlachos and Ellen Muir.. Sign up for our Email Newsletter.. For.. Email Marketing.. you can trust.. Diamond Blackfan Anemia Foundation.. Welcome.. On behalf of the Diamond Blackfan Anemia Foundation, Inc.. (DBAF) and all of our very special families, I am honored to welcome you to our website.. It is our sincere intent to educate, to inform, to empower, to support, and to connect you with the entire DBA Community.. As you navigate your way through our website, it is our hope that you will not only learn more about Diamond Blackfan Anemia, the disorder, but will also be touched by the inspirational faces of our beautiful babies, children, and adult Diamond Blackfan Anemia patients..  ...   mission and have heartened us with hope.. Thank you for visiting our site.. We encourage you to get involved with the DBAF and to contact us.. We invite you to partner with us as we continue to strive to make a difference in the lives of our children, our patients our DBA family.. We sincerely thank you for your time, your concern, your support, and for your prayers.. With sincerity and appreciation,.. Dawn M.. Baumgardner.. President, DBA Foundation, Inc.. News and headlines.. Thanks to YOU.. We did it again! More research funded.. Click here to read more.. Summary of the 2012 International Consensus Conference from Research Director, Steven R.. Ellis, Ph.. D.. Update on Leucine Trial for DBA Patients.. For more information, click here.. DBA Patients and the H1N1 Virus.. Read on.. It's YOUR DBA Newsletter.. Get Involved! Click here.. Back By Popular Demand, Wristbands Now Available.. Click here.. Thank you families and friends! DBAF funds more research.. Fundraising Events.. October 15, 2012; Georgetown, MA.. October 21, 2012; Tupelo, MS.. October 27, 2012; Mississauga, Ontario.. Copyright 2008 DBA Foundation | All Rights Reserved..

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  • Title: About Diamond Blackfan Anemia Foundation
    Descriptive info: Maddie 2 1/2 years old.. Mission.. Board of Directors.. Scientific Advisory Board.. John 3 years old.. About the DBA Foundation.. Fighting to Find the Cause and Cure for Diamond Blackfan Anemia.. The Diamond Blackfan Anemia Foundation, Inc.. (DBAF), founded in 1994, has adopted the following mission statement: "to collectively and actively generate funds for the charitable and scientific purpose of furthering, by clinical study, laboratory research, publication and teaching, the knowledge of the disorder known as Diamond Blackfan Anemia (DBA).. Our intentions are to share this knowledge, to inform, to lend support, and to communicate with all families of DBA patients.. ".. The DBAF is a 501(c)(3) not-for-profit corporation registered with the Charities Bureau  ...   are approved by the DBAF's medical/scientific advisory board comprised of medical doctors and scientists.. The DBAF organizes meetings which bring together DBA patients, families, and world-renowned physicians.. The DBAF provides informational literature to patients, DBA family members, health care professionals and other interested parties.. The DBAF networks DBA families throughout the United States, Canada, and worldwide.. The DBAF publishes a semi-annual newsletter containing personal DBA stories, DBA clinical trial information, current research, and DBA activities.. For additional information on DBA or the DBAF, please contact:.. Diamond Blackfan Anemia Foundation, Inc.. P.. O.. Box 1092.. West Seneca, New York 14224.. dbafoundation@juno.. com.. Phone: 1-716-674-2818 (Eastern Time).. Copyright 2008 DBA Foundation, Inc.. | All Rights Reserved..

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  • Title: About Diamond Blackfan Anemia
    Descriptive info: Amelia 4 years old.. Diagnosis.. Treatment Options.. DBAR Findings.. DBA Facts.. FAQs.. Glossary.. Thomas 3 years old.. What is Diamond Blackfan Anemia?.. Diamond Blackfan Anemia (DBA) was first recognized as a distinct entity in 1938, although it was called "congenital hypoplastic anemia" at that time.. Diamond Blackfan Anemia ( DBA ) is a rare blood disorder, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells.. This failure 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 blood cell stimulating factor.. Although a number of theories regarding the cause of DBA have been proposed, it is now widely accepted that DBA is a ribosomal protein disease.. The  ...   forms of treatment are blood transfusion therapy and corticosteroid medication.. Some DBA patients are in remission and need no medical treatment related to their DBA.. Other DBA patients may choose to undergo the risky procedure of a stem cell transplant (also referred to as a bone marrow transplant).. In recent years, the scientific community has discovered numerous ribosomal protein gene mutations.. This is a very exciting discovery for the DBA community, as it has resulted in increased scientific attention to this rare disorder.. Advances in whole exom sequencing are expected to advance additional gene mutation discoveries.. Diamond Blackfan Anemia is the preferred name for this disorder but other names for DBA include:.. Blackfan Diamond syndrome.. Congenital pure red cell aplasia.. Congenital hypoplastic anemia.. Aase syndrome (felt to be a subset of DBA in which there is a finger-like thumb, and not a distinct disorder)..

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  • Title: Diamond Blackfan Anemia News
    Descriptive info: Alexandra 9 years old.. DBA Newsletter.. e-newsletters.. Events.. Government Support.. Jack 1 year old.. You Did It! Thank You!.. And the winner of the last $100,000 spot in the Chase Community Challenge is.. overcoming a deficit of 1617 votes in the last 12 hours is.. couldn t have done it without their amazing families and friends is the very humble and grateful Diamond Blackfan Anemia Foundation! At 7:00pm we took the lead by 48 votes.. We worked tirelessly throughout the night and at midnight we had secured 16,123 votes! We claimed 11th place (out of over 7000 charities!) by 721 votes! Each one of those votes over the past 14 days added to our win, not just in number, but in our hearts.. Early voters put us at the top of the leaderboard right from the start inspiring us that we really could do this.. Those votes in the middle of the competition gave us confidence that $100,000 was within our reach, if we preserved.. Last minute voters were part of the final day push that we needed to take it home.. Thank you, thank you, thank you one and all.. YOU made this happen!.. Our hope for a cure depends on research.. Your continued support of our mission is needed and appreciated.. Your donation will help us fulfill our mission of supporting DBA patients, families, and research.. Thank you for your kind consideration.. To make a paypal or credit card donation please click the donate button above.. Checks can be mailed to the Diamond Blackfan Anemia Foundation, P.. Box 1092, West Seneca, NY 14224.. 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 of patient-specific gene corrected hematopoietic stem cells using induced pluripotent stem cell technology.. We are pleased to fund this exciting project that is on the cutting edge of research and has the potential to open doors to new and exciting treatment options for patients with DBA.. Dr.. Fred Goldman.. The goals of this University of Alabama at Birmingham research project are (1) to create an in vitro model of DBA using iPSC (induced pluripotent stem cells) for producing HSC (hematopoietic stem cells) by reprogramming patient cultured skin fibroblasts and (2) to use genetic recombination strategy to correct/replace the gene defect in iPS (induced pluripotent stem) cells derived from patients with the RPS-19 mutation.. In general, this research may set the stage for an important patient-specific model system for studying developmental and physiological aspects of DBA that are currently unavailable.. Such iPS cells could also be used for drug screening, gene target treatment, and other purposes.. Please see Dr.. Steve Ellis's.. Journal Club.. article below for more exciting details.. DBAF is also pleased to announce the sponsorship of the.. 9th International Conference on Ribosome Synthesis.. to be held in Banff, Alberta, Canada, August 22-26, 2012.. The conference brings together world experts on ribosomopathies and ribosome synthesis.. Diamond Blackfan Anemia will be a major player at the meeting.. This level of attention for Diamond Blackfan Anemia provides more opportunity for research and scientific advancement in understanding the disorder.. The third project we are able to fund because of your generous support, is near and dear to our hearts.. The DBAF is thrilled to announce the support of Dr.. Steve Ellis' research support work at the University of Louisville.. Steve Ellis' professional and personal commitment to DBA is immeasurable and deeply appreciated.. Not only is he our dedicated Research Director, who is working tirelessly behind the scenes, he also writes the DBAF's e-newsletter monthly Journal Club, and his lab at the University of Louisville provides research support services to groups from all over the wold, including Vlachos/Lipton group in New York, Irma Dianzani, Stefan Karlsson, and most recently, Ross Fisher, a clinician in San Diego.. They expect to broaden these activities over the next year as they continue to move forward with a gene discovery consortium including Drs.. Vlachos/Lipton, Bodine, and Arceci/Farrar.. Ellis's lab is also developing these strategies as a tool for DBA diagnosis.. We are grateful to Dr.. Steve Ellis for the integral role he plays in researching DBA and in the lives of all DBA patients and their families.. Steven R.. Ellis, PhD.. DBAF Research Director.. The DBA Foundation sincerely thanks all our families and friends that have made funding of the research and conference possible.. Our hope for a cure is research.. Your generous donations and fundraisers allow us to advance our mission of supporting DBA patients, families, and research.. Congratulations to Dr.. Adrianna Vlachos for receiving the CDC award!.. 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 was.. Cancer Surveillance Defines Diamond Blackfan Anemia (DBA) As a Cancer Predisposition Syndrome Adrianna Vlachos, MD; Philip S.. Rosenberg PhD; Eva Atsidaftos MA; Blanche P.. Alter MD, MPH; Jeffrey M.. Lipton MD, Ph.. Congratulations Dr.. Vlachos!.. DBAF DBAC Fund $125,225 Research Project.. Adrianna Vlachos' research project entitled,.. A Stategic Approach to Gene Discovery in DBA.. We are pleased to fund this exciting project with.. DBA Canada.. (DBAC) and appreciate their $25,000 commitment towards this $125,225 multi-centered project.. Adrianna Vlachos, MD.. The goal of this research project is to identify genes affected in the approximately 30-40% of DBA patients where their genes have not been identified by traditional sequencing of candidate ribosomal protein genes.. Vlachos, Dr.. Bodine, and a strong cadre of investigators at the National Genome Institute and John Hopkins University will employ state of the art technologies to further identify genes affected in DBA patients.. The investigators will use comparative genome hybridization to identify genes deleted in DBA patients that may be responsible for the disease, and interrogate the entire genome using whole exome sequencing.. We are so pleased to have DBAF's support and that of DBA Canada.. We hope to continue to discover new genes and be able to genotype more and more patients, stated Dr.. Vlachos.. David Bodine, PhD.. Why it matters.. Gene discovery not only has the potential to lead to new therapeutic treatments, it is also vital to patient care.. Initially it was thought that the vast majority of the DBA cases reported to the DBAR were sporadic.. However, with the discovery of 11 published DBA genes, family studies have identified a higher-than-expected proportion of individuals carrying the gene mutation, without ever being anemic or requiring treatment.. These individuals may have mild, if any, hematologic manifestations with or without DBA-associated congenital anomalies.. Identification, in a timely fashion, of inherited cases within a family is imperative so that appropriate reproductive and, when applicable, stem cell transplant choices can be made.. For example, asymptomatic siblings or parents can be counseled as to the risk of having an affected offspring, and asymptomatic, yet genetically affected siblings would be identified as unacceptable stem cell transplant donors for DBA patients.. The DBA Foundation sincerely thanks all our families and friends that have made funding this project possible.. The researchers also appreciate your efforts.. David Bodine stated, I promise to make this money count.. It will allow us to move much faster in our search for DBA mutations.. We are all grateful to the families and contributors for their confidence in us.. 2nd 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; the Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute and the Office of Rare Diseases Research, National Institutes of Health; the American Society of Hematology; and Hemophilia of Georgia are pleased to announce the.. 2nd National Conference on Blood Disorders in Public Health (scheduled for March 12-14, 2012.. ).. The purpose of this conference is to further advance the public health context described during the.. 1st National.. Conference on Blood Disorders in Public Health (March 2010).. and to promote the adoption and full integration of evidenced-based and evidenced-informed public health functions that are capable of promoting the health of and improving outcomes among people with a blood disorder.. We are pleased to announce that this conference is being held in conjunction with the.. Conference of the Global Sickle Cell Disease Network (scheduled for Thursday March 15, 2012).. and the.. 2nd Meeting of the Worldwide Initiative on Social Studies on Hemoglobinopathies (WISSH - scheduled for Friday March 16, 2012).. For more information on the goals and objectives of these conferences, please visit:.. http://www.. blooddisordersconferences.. com/.. 3 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.. Johan Flygare.. This project is significant for many reasons.. The Diamond Blackfan Anemia Foundation is grateful to.. Diamond Blackfan Anemia Canada.. (DBAC) for their generous support in helping to fund Dr.. Flygare's work.. DBAC received charitable status only three months ago and has graciously offered to fund $10,000 of this $50,000 project.. This first collaboration between DBAF and DBAC is certain to be just the beginning of many joint ventures.. We are proud to partner with DBAC and look forward to supporting each others' efforts.. Way to go American and Canadian families and friends for joining forces to fund DBA research in Sweden!.. Flygare's project goal is to develop better treatments for DBA by identifying chemical compounds and molecular pathways that promote proliferation of RPS19-deficient erythroid progenitor cells.. This project has two parts: In the first part, Dr.. Flygare will identify genes that when down-regulated allow RPS19-deficient erythroid progenitors to proliferate at normal levels.. The findings of this study will increase understanding of DBA pathogenesis and generate a list of genes and pathways that potentially can be targeted to treat DBA.. In the second part, Dr.. Flygare will use erythroid progenitors from a new and exciting Dox-inducible mouse model to screen for compounds that can rescue the RPS19-related erythroid defect.. The chemical screens will lead to identification of compounds that rescue proliferation of RPS19-deficient erythroid progenitors.. Such compounds will be lead compounds for development of new drugs for DBA.. By studying the mechanism by which these compounds influence the proliferation of RPS19-deficienct erythroid progenitors, more will be learned about DBA pathogenesis.. The DBAF and DBAC are pleased and proud to be able to fund Dr.. Flygare.. This talented young investigator is well known to the DBA community, and has been supported by the DBAF throughout his career.. Flygare stated, During my ten years of scientific training I have focused on DBA-related research.. This has been an excellent preparation for becoming an independent researcher with the long-term goal to develop novel treatments for DBA.. Flygare has completed postdoctoral fellowships in Dr.. Stefan Karlsson's lab in Lund University, Sweden and in Dr.. Harvey Lodish's lab at The Whitehead Institute for Biomedical Research, Boston, MA.. Flygare has recently established his own lab in Sweden and has earned the support and respect of many distinguished DBA researchers.. Flygare for his continued interest in Diamond Blackfan Anemia and we wish him and his colleagues continued success.. The DBAF is also proud to fund Dr.. Irma Dianzani's project entitled:.. Understanding the causes of remission in DBA patients.. Irma Dianzani.. Dianzani, Professor, University of Eastern Piedmont, Novara, Italy was awarded an initial $30,000 to begin her important research, with the intent of funding an additional $30,000 based on the progress of her findings and the availability of funds.. The goal of this project is to understand the molecular basis of remission in DBA patients.. While remission occurs in approximately 20% of patients, the causes are unknown.. Dianzani proposes to identify genes that, when mutated, lead to remission in DBA patients.. The identification of genetic and molecular alterations resulting in disease remission is anticipated to reveal novel genetic and/or molecular pathways that may be therapeutically targeted in DBA  ...   to contact Dr.. Gotlib by email:.. jason.. gotlib@stanford.. 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 is a slow process but we are about 3/4 of the way there.. It already passed the pre- approval, proposal internal review, and proposal external review.. Once it is approved, we can put it through our Institutional Review Board (IRB) and have doctors from other sites submit a letter of collaboration so their patients can enroll.. Our total enrollment will be 50 DBA transfused patients over the age of 2, willing to take the leucine powder mixed in food 3 times a day, and have periodic leucine levels drawn (hopefully timed around transfusions).. Please contact Ellen directly at the contact information provided below:.. Ellen Muir, RN, CNS, CPON.. Diamond Blackfan Anemia.. Surveillance and Awareness Program.. 718-470-3605 / 1-877-DBA-NURSE.. emuir@nshs.. edu.. 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 what are the best options for you and your family.. These are general recommendations.. The care of each patient should be individualized with his or her physician.. There have been several inquiries about H1N1 (swine flu) and DBA.. We at the DBA Registry advise the patients treated here at Schneider Children's Hospital in New York to get immunized for both the H1N1 virus as well as the seasonal flu.. If you have received the seasonal flu vaccine in the past with no issues, the H1N1 vaccine is being prepared in the same way and should potentially be safe for you or your child.. If you have severe, life threatening allergies, reactions or events to any of the substances in the vaccine, you should not get receive it (eggs or preservative).. There is a preservative free form of the vaccine which contains no Thimerosal.. It comes in a prefilled syringe.. Only the inactivated form of any flu vaccine should be given for DBA patients as well as family members.. The nasal mist (given up the nose) is live virus and should not be used.. The vaccine has been given to neutropenic cancer patients receiving chemotherapy.. The goal is prevention so vaccination is preferred to the actual virus.. If the DBA patient is not a candidate for the H1N1 vaccine then the members of the household should be vaccinated in hopes of protecting the patient.. If your child should get the H1N1 virus, Tamiflu (Oseltamivir) and Relenza (Zanamivir) are the only antivirals to help reduce the time that you have the virus and minimize the symptoms.. It does not cure the virus.. Relenza is not to be used if you have asthma or lung disease and are younger than 7 years of age.. In 1976, an earlier type of swine flu vaccine was associated with cases of Guillian-Barre Syndrome (GBS).. Since then, flu vaccines have not been clearly linked to GBS.. For more information please on GBS, see.. cdc.. gov/h1n1flu/vaccination/gbs_qa.. htm.. For more information on the H1N1 flu and the vaccine go to:.. www.. flu.. gov/h1n1flu/.. For high risk students:.. gov/professional/school/k12techreport.. html.. June 2009.. 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 of your efforts more invaluable research is being supported to help find a better treatment and hopefully someday a cure for DBA.. Research: Characterizing the mechanism of glucocorticoid treatment in DBA.. Glucocorticoids have been used as a DBA treatment for many years.. How glucocorticoids work to stimulate haemoglobin levels in DBA patients is unknown.. Flygareâ s goal is to understand the mechanism of action by which glucocorticoids exert their positive effects in certain DBA patients.. By understanding the mechanisms through which glucocorticoids work it may be possible to develop less toxic drugs that have similar or improved clinical benefits.. Shuo Lin, co-PI: Nadia Danilova.. Research: Mechanism underlying erythroid deficiency in DBA using a zebrafish model.. Lin and a co-investigator Dr.. Kathy Sakamoto received funding on 2005 from the DBAF to develop an animal model of DBA.. With these funds they developed a zebrafish model of DBA which recapitulates some of the clinical features of DBA in humans.. They were able to show that these clinical features could be rescued by genetically targeting a protein known as p53 or with drugs that inactivate p53.. These studies had a dramatic affect on DBA research.. Lin will use the current award to further investigate the zebrafish model of DBA with an eye towards understanding the role played by p53 in DBA pathology.. Understanding this pathway could lead to molecular targets for the development of new therapeutics for use in DBA.. Principal Investigator: Dr Lydie Da Costa.. Research: Genotype/phenotype relationships in DBA.. DBA is a very heterogeneous disease.. All genes identified to date known to be affected in DBA encode ribosomal proteins.. These proteins can be components of the large or small ribosomal subunits.. A growing number of studies indicate that the clinical presentation of DBA may be influenced by the nature of the ribosomal protein affected.. Da Costaâ s group has shown that different ribosomal protein mutations have distinct affects on the behaviour of cells derived from the marrow of DBA patients.. These studies will provide insight into the clinical variability of DBA and perhaps ultimately lead to designer therapies.. Scientific Conference: 3rd Congress of the International BioIron Society and the 8th International Symposium on Microbial Iron Transport, Storage, and Metabolism.. Iron overload and chelation therapies continue to be major topics of interest to DBA families.. The DBAF was a bronze level sponsor of the 3rd Congress of the International BioIron Society where investigators from all over the world congregate to advance the fields related to iron metabolism.. Congratulations George Buchanan, M.. , ASH Mentor Award Winner 2008.. The 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 shown a sustained commitment to mentoring, have made a significant, positive impact on their mentees careers, and have advanced research and patient care in the field of hematology through their mentees.. This award is based on the training experiences and success of the nominee s mentees, not the mentor s personal career achievements.. Those selected as superb mentors are chosen because they are involved in the process of guiding, supporting, and promoting the training and career development of others.. Two awards are given each year, one in the basic sciences and one in clinical investigation and training.. The clinical investigation award was presented to George Buchanan, M.. Buchanan is a pediatric hematologist at the University of Texas Southwestern Medical Center.. He is the Children s Cancer Fund Distinguished Chair in Pediatric Oncology and Hematology and the director of the Barrett Family Center for Pediatric Oncology.. We are pleased to congratulate Dr.. Buchanan, a member of our Scientific Advisory Board, for his outstanding commitment to his students and colleagues.. Congratulations 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 winners receive a $500 honorarium plus annual meeting travel reimbursement.. This year's 2008 ASH Merit Award for an undergraduate student was Emily Devlin, B.. for her abstract.. A Mouse Model for Diamond-Blackfan Anemia Demonstrates a Dominant Negative Effect of a Point Mutation in the RPS19 Gene.. We are pleased to congratulate Emily and proud to financially support the research she and Dr.. Bodine are conducting.. DBAF funds study on Development and Characterization of Mouse Models for DBA.. Thanks to the support of our famiies and friends we were able to fund another worthwhile DBA research project.. David M.. Bodine from the NIH is being funded for his research to create and analyze mouse models for some of the mutations that cause Diamond-Blackfan Anemia (DBA).. An animal model of DBA will allow an in depth analysis of the defect(s) caused by each of the DBA mutations in untreated animals, allowing the mechanism of the disease to be understood.. Once the mechanism has been identified, the effectiveness of conventional therapies can be evaluated and novel therapies designed to target the specific defect can be developed.. The mouse model created will be distributed to the DBA community for analysis and the testing and development of therapies for DBA.. International 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 to ribosome synthesis.. The meeting alternates every third year between the US and Europe.. The meeting in August 2009 will be held in Germany.. In 2009, as was the case in 2006, there will be a session devoted to ribosome synthesis and disease where DBA figures prominently.. There are so many important connections now being made between defects in ribosome synthesis and triggers of cell death and these connections provide new opportunities for drug development.. Moreover, these are central pathways within cells that are being studied just as intensely by investigators in other fields.. Therefore, the next big development in understanding DBA can come from virtually anywhere.. To see an acknowledgment of the Foundation's support for this upcoming meeting follow the link below and scroll down.. http://cwp.. embo.. org/cfs09-09/index.. DBA 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 we share with you this Clinical Care Consensus Document, which has been published in the British Journal of Haematology and offers the latest opinions on how to diagnose and manage the care of patients with DBA.. Leucine 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 not FDA monitored.. The drugs are not purified and are in combination forms.. 500mg of leucine in one combination product may really only be 350 mg or 620 mg, for example.. There is no FDA oversight in the preparation of these supplements.. The medical community is therefore not recommending starting all DBA patients on these over-the-counter leucine/combo product.. However the DBA community is very interested in leucine.. Since Dr.. Pospisilova presented these data at the DBA International Conference in March the DBAR team led by Dr.. Vlachos and the Arturi Foundation have been working on finding out more.. The DBAR team is trying to find a company that makes a purified leucine product, get them to be interested in a trial for DBA patients, at a controlled dose with a controlled product.. Everyone is anxious to start leucine, but trying a combination, unpurified product may yield poor results and then everyone will be disappointed, much the less may make others unwilling to try the purified product for fear of failure.. Please let's do this in an orderly way.. Waiting is a lot to ask and everyone wants a quick cure but we should try get the best product available for the best results.. The Czech Republic patient was a single experience so we have to be careful.. The leucine seems to be well tolerated but again it has been only a handful of patients.. I hope this is helpful to all.. We will keep you posted.. Head, Bone Marrow Failure Program.. Associate Head, Stem Cell Transplant Program,.. Schneider Children's Hospital,.. New Hyde Park, NY 11040.. Printable 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..

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  • Title: Diamond Blackfan Anemia Research
    Descriptive info: Munkh-Ereedui 5 mo.. ICC.. Grant Proposal Form.. Projects Funded.. Research Publications.. Because of our families' continuous support, the DBAF has been able to fund many important research projects.. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US.. The International nature of these awards is important because for a rare disease like DBA there are typically too few researchers in a single country to truly push research forward.. Research support highlights.. Early support for the DBA registry.. Support for clinical studies on DBA diagnosis, management, and treatment.. Support for the identification of DBA genes.. Support for studies on the role of ribosome synthesis defects in the pathophysiology of DBA.. Support for the creation of a zebrafish model of DBA.. Support for the creation of a mouse model of DBA.. Now more than ever.. With the current financial crisis affecting all quarters of our economy including  ...   and other Bone Marrow Failure Syndromes.. This program provided a mechanism to ensure support for research on DBA despite the highly competitive environment for Federal research dollars.. This support, together with research support from the Diamond Blackfan Anemia Foundation and the Daniella Maria Arturi Foundation, led to a period of unprecedented growth in our understanding of the molecular basis for DBA.. It is unclear, however, whether the Federal Government will be able to continue its level of commitment to DBA research over the next few years.. As such, the percentage of the total amount invested in DBA research that comes from private foundations will likely increase in the near future.. Therefore, to maintain the momentum of the past 4 years towards gaining a better understanding of the molecular basis underlying DBA and more importantly, to begin to translate these discoveries into better treatments for children with DBA, the DBA Foundation needs your support now more than ever..

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  • Title: Diamond Blackfan Anemia For Families
    Descriptive info: Finn 11 months old.. Where to get support.. Registration Form.. DBA Families in the News.. DBA Care Notebook.. Resource Centers.. Camp Sunshine.. DBA Registry.. National Cancer Institute.. Clinical Trials.. Emmalynn 2 years old.. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends.. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia.. Knowing where to seek expert medical advice and participating in the DBA registries, clinical trials, family meetings, and email support groups benefits all DBA patients.. For most, knowing you are not alone and that there are others that feel and know what you are experiencing is an integral part of the coping process.. We strongly encourage you, our DBA family, to reach out to us and get involved.. Our hope is that this site provides some avenues for you and your family to assist  ...   Gabriel Bruton.. Jacob Buckmaster.. Katie May Burnett.. C.. In memory of.. Haley Callahan.. Jayme Cass.. Chasity Chandler.. D.. Keilani Delgado.. Lakshmi Desai.. Doug Dickson Jr.. Journey Dickson.. Bowen Downey.. F.. Tori Flahavan.. Patrick Foster.. G.. James Thomas Garrett.. Liam Gorman.. Peyton Green.. H.. Alexander Hays.. Richard Heflin.. Alice Holewinski.. Lydia Holewinski.. MayRose Hurst.. J.. Chloe Janow.. Madison Johnson.. Thomas Johnson.. K.. Jodi Kiesewetter.. Kendra Kofron.. L.. Amelia Lamb.. Bailey Lightner.. M.. Emmalynn Matthies.. Mia McPoland.. Kylie Jae Monica.. N.. Jakob Ngatai.. Kathryn Patton.. McKindree Patton.. R.. Jason Rose Take Charge of Your DBA.. Jason Rose's Speech ICC 2008.. Maggie Rudnicki.. Ian Rutledge.. S.. John Shannon IV.. Coleson Shaw.. Jillie Snyder.. Ruby Swanson.. T.. Katie Trebing.. W.. Atleigh Whitman.. Brett Wiegref.. Lola Willford.. Facebook.. To Like the Diamond Blackfan Anemia Foundation on Facebook click.. To join DBA Family Group on Facebook click.. To join Fundraising for Diamond Blackfan Anemia" click.. Twitter.. Do you twitter? If so, follow us and keep up to date on Diamond Blackfan Anemia tweets at.. http://twitter.. com/DBAFoundation..

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  • Title: Diamond Blackfan Anemia Fundraising
    Descriptive info: Pascal 7 years old.. Fundraising Activities.. Audrey 7 months old.. (DBAF) is proud to fund research projects and acknowledges that it is the hard work, coupled with the love and generosity of our families and friends, which enables us to continue our efforts.. We are sincerely grateful for the commitment of the many donors that have supported our accomplishments.. We, the families, friends, and loved ones of DBA patients, are a determined and dedicated family.. We ask each of you to consider helping us raise money to continue implementing our mission.. It is through this partnership with all our families that we will accomplish the most.. There are numerous fundraising activities our DBA families organize.. Many families have chosen to fundraise through letter writing campaigns and personal solicitations, other families have organized dinner  ...   their families.. In addition to our families fundraising events, donations may be made to the DBAF as memorial gifts, holiday wishes, or as a way to remember someone celebrating a special occasion (birthday, anniversary, marriage, bar/bat mitzvah, etc.. ).. Also, many employers have Matching Gift Programs that will match their employees donations.. Please ask your employer for details.. The DBAF is also registered with many United Way Donor Choice Programs.. Please contact your local United Way Office for more details.. The DBAF is here to help you and we will be happy to assist you in your fundraising efforts.. Please contact us at 1-716-674-2818 (Eastern Time) or by emailing.. if you would like to join us in our fight against Diamond Blackfan Anemia.. For a list of upcoming events and ongoing activities,.. click here..

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  • Title: Diamond Blackfan Anemia Links
    Descriptive info: Lane 8 years old.. Doug 25 years old.. Registries.. Diamond Blackfan Anemia Registry of North America (DBAR).. dbar.. org.. Established in 1993 to collect accurate clinical and demographic data on DBA patients and their families.. Toll-Free Number: 1-888-884-DBAR (3227).. National Cancer Institute.. marrowfailure.. cancer.. gov/.. Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS).. This is a study of the epidemiology and natural history of DBA in patients and their families.. Foundations.. Daniella Maria Arturi Foundation (DMAF).. dmaf.. Provides financial support for the research of DBA, increases awareness of DBA among medical professionals and federal policy makers, and coordinates the Annual DBA International Scientific Consensus Conference.. dbacanada.. DBA Canada s mission is to provide education, support and resources, as well as to help fund research of DBA.. This foundation was started out of a need for Canadian individuals and families affected by DBA to have a resource which they can turn to for help.. DBA Canada receives its support solely through donations and family fundraisers and is a registered charity with the Canada Revenue Agency.. DBA UK.. diamondblackfan.. uk.. DBA UK is a registered charity run by elected volunteers and governed by a written constitution.. They aim to deliver support, research and hope to the DBA community by bringing families together to share their experiences, communicate the latest medical information and raise funds to support those with DBA in the UK.. Web-based Support Groups.. Blackfan Anemia, email support group.. Blackfan@yahoogroups.. An e-mail server that allows you to send one e-mail that automatically gets distributed to everyone subscribed to the list.. This is a semi moderated website and e-mail group for DBA parents and patients.. To subscribe, e-mail: blackfan-subscribe@yahoogroups.. com, or go to the website at:.. http://health.. groups.. yahoo.. com/group/blackfan/.. DBA21.. DBA21@yahoogroups.. This is a semi moderated website and e-mail group for adult patients only.. To subscribe, e-mail: dba21-subscribe@yahoogroups.. com or go to the website at:.. com/group/dba21/.. CaringBridge.. caringbridge.. This is a site for free, personalized websites that support  ...   physicians, and conducts research.. Phone: 1-800-627-7692 Office of Patient Advocacy: 1-888-999-6743.. Cancer.. American Cancer Society.. Publications on cancer, treatment options, patient care, and support groups.. Phone: 1-800-227-2345.. Government Organizations.. Centers for Disease Control and Prevention (CDC).. gov/ncbddd/hbd/dba/default.. Spanish version.. gov/ncbddd/Spanish/dba/index.. Sally Owens, BSN, RN Health Scientist, Division of Hereditary Blood Disorders National Center on Birth Defects and Developmental Disabilities Main Number: 1-404-718-8600.. National Institute of Health (NIH).. nhlbi.. National Heart, Lung and Blood Institute Health Information Center Provides information and resources.. Phone: 1-301-592-8573 TTY: 1-240-629-3255.. Medical care provided at no charge to patients who meet criteria for NIH clinical trials:.. cc.. Phone: 1-301-496-3841.. E-mail: mussel@mail.. Social Security.. ssa.. Health Insurance.. COBRA Health Insurance.. dol.. gov/ebsa/faqs/faq_consumer_cobra.. COBRA provides certain people with temporary continuation of health coverage at group rates.. Medicaid Health Insurance.. cms.. hhs.. gov/home/medicaid.. asp.. Medicaid health insurance provides health care coverage for some people who cannot afford it.. Hematology.. American Society of Hematology (ASH).. hematology.. org/patients.. The mission of the American Society of Hematology (ASH) is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood by promoting research, clinical care, education, training, and advocacy in hematology.. In addition, ASH provides a wide variety of information and resources for patients with blood disorders, such as links to patient support groups, free access to Hematology (containing current disease-specific information discussed at our annual meeting), and a Find a Hematologist feature to help match patients with practicing hematologists in their area.. Rare Diseases.. National Institutes of Health.. rarediseases.. info.. Office of Rare Diseases Information about rare diseases, including links to support groups.. National Organization for Rare Disorders (NORD).. raredisease.. Information and patient networking.. Phone: 1-800-999-6673 or 1-203-744-0100.. ORPHAN@rarediseases.. Support Services.. Camp Sunshine.. campsunshine.. Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families through various stages of a child s illness.. The year-round program is free of charge to all families, and includes 24-hour onsite medical and psychosocial support.. Main Number: 1-207-655-3800..

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  • Title: Diamond Blackfan Anemia Treatment Options
    Descriptive info: Bailey 11 months old.. Peyton 2.. 5 years old.. Diamond Blackfan Anemia Foundation Brochure.. International Clinical Care Consensus Document.. How I treat Diamond-Blackfan anemia.. by Adrianna Vlachos and Ellen Muir.. Printable DBA Educational Materials prepared by the CDC:.. DBA Care Notebook:.. Instructions.. Contact Information for the DBA Medical Team.. DBA Doctors/Providers Fact Sheet.. Doctor Visits and  ...   for Girls - 2 to 20 Years.. Growth Chart for Boys - Birth to 36 Months.. Growth Chart for Boys - 2 to 20 Years.. Medication Log Sheet.. Laboratory Testing.. Transfusion Log Sheet.. Vaccination Log.. Notes Pages.. Binder Cover.. QR Code for Smartphone users:.. or.. img src= http://qrcode.. kaywa.. com/img.. php?s=5 d=http%3A%2F%2Fwww.. dbafoundation.. org alt= qrcode /..

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  • Title: Donate
    Descriptive info: Katie 18 months old.. Lizzie 14 years old.. Please Donate.. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients.. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law.. The DBAF is audited annually by an independent accounting firm and maintains an outstanding fiscal responsibility to our donors.. We are proud that over 96% of our revenue is used  ...   funds for the charitable and scientific purpose of furthering, by clinical study, laboratory research, publication and teaching, the knowledge of the disorder known as Diamond Blackfan Anemia (DBA).. " Thank you for allowing us to achieve our mission.. To make a donation by mail, please make checks or money orders payable to DBA Foundation and mail to:.. PO Box 1092.. West Seneca, NY 14224.. To make a donation by credit card or through PayPal, please click below:..

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  • Title: Diamond Blackfan Anemia Foundation Contact
    Descriptive info: Melissa 30yr, Laurie 50yr.. James Thomas.. 6 months old.. Contact Information.. For additional information or to add a DBA patient's photo, your family's link, news story links, and DBA fundraising announcements to our site, please contact:.. West Seneca, New York 14224..

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  • Archived pages: 46