Diamond Blackfan Anemia Foundation

我来自中国安徽，我时刻关注DBA的最新进展，我希望这能够帮助到我的女儿，她很可爱，我想不远的将来我们一定可以战胜这个疾病，回归健康。

The DBAF has been profoundly helpful - both educationally and on a personal level - as my daughter went on her transplant journey. The Executive Director is tireless work on behalf of the DBAS community.

This organisation has helped our family in so many different ways always there with advise and caring words we would be lost without them

DBAF is the most helpful, supportive, and educational foundation when it comes to understanding Diamond Blackfan Anemia. This disorder is so rare and challenging and DBAF is there with words of encouragement on Facebook or on their website. I truly don't know how we would survive DBA if it wasn't for the educational material and supportive feedback from the foundation. DBAF also brings together the scientific community at the International Consensus Conference for DBA and funds research to help find a cure.

The DBA Foundation has been a life-changing organization for patients like me. With such a rare disease, it often feels isolating and lonesome given you may not readily have a support-system in place of like-minded individuals outside of your own family circle. Through this Foundation, and - specifically - Dawn's tireless and passionate dedication to the DBAF - I have been able to bridge this gap and expand my knowledge considerably both on the medical side of DBA and on the social/intangible effects of this anemia. In short, the DBAF has enabled me to not only more wholly own this diagnosis, but also flourish despite the many setbacks brought on due to the wealth of knowledge, support, and care I feel every day.

My world could not exist without this organization. My step-son 28 has DBA, he came into my life in 2000. In a day that facebook was not around and connecting with others was the old fashion way.

The DBA Foundation provides amazing connections, patient advocacy, spearhead of many medical initiative and research.

Honestly, there is to much to say for this foundation.

The DBAF is a life saver! When we were getting no answers on our son and his illness, a simple message with a question was all it took and they were there for us and still are. They lead the fight for research as well as keeping us all informed along the way. Who knows where all of us would be today without them. I for one am grateful for everything they do!

My dad worked with DBA patients as a hem/onc before he passed and I do wish he would have gotten the chance to see the amazing work this foundation does. I know he would have loved to be a part of it.

This foundation has allowed my sister to have a community while she deals with her 1 in a million blood disorder and funded research that discovered her gene mutation, which empowers her to make more informed health decisions. We love the DBAF ❤️

I don't know where we would be without this amazing Foundation. Truly lifesaving. They have given us so much over the years. Their knowledge is second to none, their support is 24/7 and lifelong. Its international and I now feel I have family all over the world. Forever grateful.

The DBAF has been a life savior in helping our family navigate this chronic illness. My son was born 40 years ago with a diagnosis of DBA. We had no idea what this meant for our son and our family. As a mother I felt sad and so alone. i just wanted him to be a healthy and happy child. We had some tough times and I had difficulty getting answers as to what this meant for him. The DBAF was the most wonderful group that i could ever imagine. Thanks to finding DBAF and the wonderful Dawn Baumgardner she helped us find an awesome community and wonderful physicians that understood this illness. I don't know what we could have done without the support of this caring, well-informed group. My son is now able to handle his chronic issues with confidence knowing that the DBAF is always there to help him through some of his questions and his decisions.

Diamond Blackfan Anemia Foundation is an amazing nonprofit organization! They are spreading/raising awareness for DBA! All while trying to find a cure for it with the research!

The DBA Foundation is an outstanding organization who truly fulfills its mission statement. As a family we have personally been supported during our difficult times by the Executive Director, who is passionate about always being available for the families. Additionally the Foundation keeps its fingers on the pulse of the research community both nationally and internationally in order to not only keep the families abreast of new developments but also to encourage and facilitate new research and researchers.

An amazing foundation that has the most up to date information available while also having someone to help you answer questions you may have.

The Diamond Blackfan Anemia Foundation has helped our family for 21 years. The support that they provide to families is truly amazing. This is a rare disease so you can feel like you are on your own island. The Foundation connects families to the specialist in the field and helps connect families so we can support each other. They also support research for Diamond Blackfan Anemia. This rare disease that I think is easily forgotten. The foundation keeps up with the researchers and funding to help find the cause, best treatments and overall research for our kids. We are so thankful for the foundation!!

My daughter wouldn't be alive if it were not for the tireless efforts of The Diamond Blackfan Anemia Foundation's (DBAF) president, board members, and the teams of doctors with whom the DBAF has partnered. This very small nonprofit of an extremely rare bone marrow failure syndrome, DBA, has DIRECTLY improved the health of people with DBA. The DBAF can change lives because of its excellent management by Dawn Baumgardner, and because of great efforts by the DBAF scientific advisory board. DBAF funds are prudently used for grants and studies which have changed the outcome of how patients are clinically treated!! How often can a donation truly change the life of a person!? During our biennial meetings, parents and patients have the opportunity to met with and learn from scientific investigators and doctors who have used donations to the DBAF to improve the lives of people with DBA. So few investigators or doctors are able to truly change the course of a persons life, and because of the DBAF's funding they have done just that. As a monthly donor to the DBAF, I'm confident that my donation is truly helping to improve and save the lives of people with Diamond Blackfan Anemia. Thank you to all of the people who have worked and given yourselves to the Diamond Blackfan Anemia Foundation. I also thank those of you who choose to donate to this exceptional organization!

The DBA Foundation is a valuable resource for families who face many unknowns when touched by this rare disease. It is a source of comfort along with guidance and helpful information. The efforts to raise funds for research and a cure are ongoing by those who give their all to this worthwhile non profit.

This organization has continued to provide the support and encouragement needed for our DBA warriors and their families.
This is not only a place where one can seek compassion and understanding…it is also the place to turn to for the most updated research and guidance in treatment plans.
It is hard to put into words the importance of the DBA FOUNDATION and the impact it has, but it is truly needed and appreciated.

Such a wonderful resource for us families! I couldn't imagine raising DBA children without them.

When my son was diagnosed with this rare blood disorder, I immediately did a Google search and found the Diamond Blackfan Anemia Foundation. Not only does this charity support ongoing research for this rare disorder, but the Executive Director has always been available and incredibly helpful with any questions or concerns we have. She always points us in the right direction. This foundation has become our “go to” for all questions DBA related

The DBA foundation provides invaluable support to families and patients dealing with DBA. We don’t know how we would have gotten through the early years of our diagnosis without them. They have connected us with other DBA families who are now considered family. Their love and support is life saving. They also provide much needed funding for research into better treatments and hopefully ultimately a cure. We love the DBA foundation!! ❤️

This foundation has been instrumental in giving me a wealth of information, emotional support, and the strength I needed to raise a son born into the challenges DBA presents. This foundation and Dawn Baumgardner were the answer to this momma’s heavy hearted prayers. The connections I have made continue to bless me and my son’s life. I cannot say enough of how important this foundation is to our DBA community.

My daughter was diagnosed with DBA in 2007, and I was so terrified about what that meant for her future. Fast forward 14 years, and there are so many critical, life changing scientific advancements, many due to research grants from the DBAF. I’m a monthly donor & have been for years. On behalf of patients and their families, I am confident that the DBAF is an excellent fiduciary of its funds

Diamond Blackfan Anemia Foundation - For patients, for families, for research!

Our Jacob has DBA.
He is 8 years old and has 155 blood transfusions. The support of the DBA Foundation is amazing
Not only do they offer support, but knowing they support research is heart warming. The website keeps us uptodate as well. We cannot thank them enough for being there for us.

18 years ago, my nephew was diagnosed with DBA. Who ever heard of that? We had no idea what it was, what to expect, who could explain it in simple, understandable terminology. Not "doctor speak." My sister, my nephew and I soon found ourselves on Long Island, NY. Another first for us! There, we met some of the most premier doctors and researchers. They told us about DBA FOUNDATION. Through this foundation we found answers, suggestions, help, hugs, and support. Regardless of whether we were aunts, uncles, cousins, friends etc. If anyone needs help, this foundation is there giving everything to assist in all things, big or small. No question is dumb or dismissed. The advances made through research is so promising and hopeful. Watching the love and determination in everyone connected with the DBA foundation give strength to the warriors fighting this orphan illness, it gives families hope and most of all, this foundation reminds me of the little engine that could. They keep going and shine a light on the hope and research that a cure is just around the corner. I can't thank this org for everything they have done and continue to do for my family and all the families living with DBA

Words really can not describe how wonderful the DBA foundation is. I feel like they are our voice for a disease that is so rare. I feel like my son is doing so well because of the education and support and research they have done. They continue to strive to help find a cute for this disease. They educate families so they can make sure their loved one is getting the best care possible from their local hospitals. Honestly I would be really scared to think how my sons health would be if this foundation did not exist. That is how important they are!

My 18 year old nephew was diagnosed with Diamond Blackfan Anemia at 9 months. The DBA Foundation raises money for research because there isn’t a lot of public funding for research because there aren’t a lot of people with DBA. The DBA Foundation has been instrumental in getting research done to help find a cure. They have a session for the people that have DBA , as well as for family members. They bring in doctors and researchers from around the world. These sessions last 5 days on average. Without the funding they receive, this wouldn’t be possible. The DBA Foundation truly cares about everyone affected by this and works very hard to find raise for a cure.

The Diamond Blackfan Anemia Foundation has been instrumental in funding important research for this rare blood disorder. They have been incredibly important supplying resources for families and moral support. I am forever grateful for the opportunity to connect with other DBA families. So nice to connect with others!

I first heard about the Diamond Blackfan Anemia Foundation in January of 2004. My son was in the PICU and the doctors told me that they believed he had Diamond Blackfan Anemia. They told me that if I was going to google it that they suggested I look at the Diamond Blackfan Anemia Foundation website. They said that is where I would find up to date information and correct information because there’s not a lot of places that have even heard about this illness. They have been such a wealth of information over the years and the support they give to the families is incredible. Because this is such a rare illness it is very easy to feel isolated and they make sure you feel like they are always a phone call or email away. When my son has to see a new doctor and they have questions about DBA I tell them to go to the website. They always say they learned more from the website than they did in medical school.

This foundation has been an invaluable resource to our family. We have received evidence based information and support. We are grateful to all involved.

No amount of gratitude can express the support that this foundation has given me as a Diamond Blackfan Anemia (DBA) patient. Being born with a condition as rare as this, I never in my dreams thought that a foundation so small would be able to provide the massive support that it has. From connecting with others to giving out resources, this foundation is truly amazing in everything it provides. I hope that current and future families and volunteers will share similar gratitude and find the same support that I have found.

So much genuine care, concern and support. We love our DBA Family.

Great nonprofit with an excellent track record funding research on treatment options for Diamond Blackfan Anemia. I have been following this Foundation for just 3 1/2 years but am continually amazed at how effective the DBAF is at staying on top of supporting the efforts of the most cutting edge research. In addition, it does a phenomenal job of supporting patients and families, helping them connect with other patients as well as providing a wealth of treatment- and research-related resources. I honestly cannot imagine how I could have navigated my son's treatment (or kept my sanity in the process!) without the DBAF.

Wow!!! What an unbelievable organization!!! Such a great cause but mostly it’s the kind and caring people that take care of everything!!!

The foundation has been such a source of support and information for our family. We would be lost without it!

Our 6 year old has Diamond Blackfan Anemia, and the foundation has been a tremendous source of hope for us and her.

Without the diamond blackfan anemia foundation we wouldn’t have had the resources we needed for the proper care of our son. Without them I don’t think our son would be thriving as well as he is. They’ve been here for us since the day we found out his anemia until today they have helped us and continue to do so.

My brother has this and I am thankful to all the doctors devoting their time to try to help him.

There are not enough words to describe how amazing this foundation is. Not only do they provide countless information about DBA, including contacts for specialists, camp, conferences for doctors, but they are also there when you need someone to listen who understands what most people can not. They not only become friends, they become family.

This foundation has done so much for my family & my DBA family!

Amazing resource for patients and families! So helpful!

My daughter was diagnosed with Diamond Blackfan Anemia at 5 months. When your infant becomes dangerously ill, your world comes apart. When your infant becomes dangerously ill with an exceedingly rare disease, there's a host of other challenges: getting high-quality care, finding reputable information, connecting with others who have similar experiences. The Diamond Blackfan Anemia Foundation works on so many levels to support people and families living with DBA. They run camps and workshops to ensure that every DBA patient - no matter where they live and what access they have to medical care - has the information they need to stay healthy. The Foundation provides mental and emotional support to people with DBA and their caregivers. And, it brings our patient community together to learn, to cry, to hold each other up in hard times and celebrate our successes. Beyond that every day work, the DBA Foundation sponsors and coordinates an amazing range of scientific and medical research that has advanced the care and health of DBA patients. The DBA Foundation saves lives every day.

This organization helped us to navigate a very difficult time with our own child who has DBA, and helped us to set up a similar model to support others in another country! We are so grateful to have found this resource.

We are so thankful for the DBA foundation. The Executive director, is always readily available to help with any and all questions that we have pertaining to Diamond Blackfan Anemia. In addition, the work they do to fund and support ongoing research is just incredible. Wish I could give 10 stars

A foundation that touches the lives of every DBA family longing and yearning for a soon to be cure to this disease that impacts our lives and the lives of our beloved children every day. The dedication and support provided by this foundation is something we as a DBA family cannot love without.

An amazing organization that brings people together, gives information and education to those who live with a DBA. Having a child with this rare disease, prior to this organization’s existence I see firsthand the support that new parents and patients receive from the beginning, which reduces at least some of the stress with a diagnosis of a rare disease.

Having a child with a rare blood disorder can be devastating, scary, and lonely. The Diamond Blackfan Anemia Foundation has provided us with invaluable information, resources, support and when needed sympathy and a place to vent. We are truly a DBA family and they have helped me immeasurably.

The DBA foundation was like a lifeline for our family during a tumultuous time in our lives. The foundation helped us understand DBA and connect with others affected by the condition.

This foundation is always working hard at supporting families with Diamond Blackfan Anemia. They fundraise continuously to pay for research to find a cure. They organize a wonderful week at Camp Sunshine every two years for families to meet and support each other and meet the top doctors and researchers of DBA. They are always there for any support we need. Thanks for the awesome job DBAF.

the DBAF Charity is so amazing they always are finding new ways to help all of us suffering from DBA. They have put together the first ever Adult DBA meeting which not only changed my life but changed everyone who attended lives. gettjng other people to notice the DBAF can really help all of in the DBA community to connect more and help us learn more about the issues we go through everyday. The DBAF has really changed my life for the better and I am so thankful for them everyday

My son has Diamond-Blackfan Anemia and I cannot imagine how would have ever made it through all of the hard decisions without the support, education, and compassion this organization provides.

It is hard to put into words what the Diamond Blackfan Anemia foundation means to our family. It is through there hard work and dedication that we have hope that someday there may be a cure to save my son. In the meantime, they work tirelessly to provide support and education to individuals and families living with this rare blood disorder everyday. Because it is such a rare disease, the DBAF is our lifeline to information and education on how to have the best quality of life possible.

Great Foundation doing much needed work to fund a cure for DBA!

If ever we needed questions answered or just a listening ear, someone was always there with compassion, understanding and wisdom.

I don't know where I would be without this AMAZING foundation. They have led me in all the right directions regarding the care of my daughter who is affected by Diamond Blackfan Anemia. My sincerest thanks for all you do and the research efforts in trying to find a cure for this disease.

I can’t even begin to express how much the DBA Foundation has helped me. They have helped me to meet other patients with DBA, which has allowed me to connect and seek help from that community. They have also allowed me to meet with and get advice from experts who study and treat DBA. Without them, I would not be where I am today with my treatment and quality of life.

The DBAF has changed my life. As an adult patient I went many years without knowing anyone else with DBA. Not only did the DBAF get me introduce me to others like me it also put me into contact with with the experts working on DBA. I have gained many lifelong friends and invaluable information to better my overall health. They also recently funded an all adults gathering and it was amazing.

The DBA Foundation has been an amazing resource for my family when we first received our life altering diagnosis. The foundation has organized and funded amazing programs, such as Camp Sunshine, which allows us to meet other individuals with this bone marrow failure disorder and meet and have consultations with the leading doctors and researchers in the country. The foundation also funds critical studies and research that will hopefully find a cure for DBA in the future. Our life would not be the same without the DBA Foundation.

This organization is amazing. We have attended several meetings and all bring the latest medical information and provide an opportunity for individuals to network and share.

We adopted my son in 2012 with a rare bone marrow failure disorder. We didn't have a grasp of how rare DBA is. Our clinic connected us with a camp who connected us with the Diamond Blackfan Anemia Foundation. We're never alone, the foundation is selfless and will help any time of day or night, no matter how big or small the question. The knowledge and love are endless. We are so thankful for the Diamond Blackfan Anemia Foundation - they saved our son's life and helped us support and advocate for proper treatment. We are forever grateful.

This non-profit has been truly instrumental in helping me maintain my care dealing with a rare disease! The resources this foundation provides to the families it supports is incredible! I have worked with my different foundations and this one is by far the best! So knowledgeable and helpful! So glad we found this wonderful organization!!

Truly the best charity on this planet. Support, friendship and the best medical knowledge and research expertise. Cannot thank the team enough, has been life changing.

Our son was diagnosed with Diamond Blackfan Anemia at 2 weeks old, due to a falling hemoglobin of 4. We were very frightened and had no idea what it was or would mean to his future. The DBAF was a godsend of Information and support. The people are so helpful and caring.

Wonderful nonprofit! Great cause and easy to work with!

Because of this nonprofit, I was able to go to a conference where I could meet others with the same disease I suffer from. The conference was held over a weekend and brought together different doctors, social workers, and therapists to discuss how to best manage our disease. The effort that went into the weekend was outstanding. After going through 32 years of never meeting anyone else with my disease, I was finally able to do so and I have this nonprofit to thank for it!

The DBA Foundation is such a great support to all DBA families and works really hard to raise money to find better treatment options for our DBA fighters.

Without the DBA Foundation we would never have been able to talk to the specialist of DBA who have dedicated their lives to helping people like my son and husband. These specialists have been a big part in helping us make sure my family get the treatment they NEED to live when so many doctors out there have never even heard of DBA. I don't even want to know where we would be if we would not have found the DBA Foundation and all the wonderful people we have come to know because it.

Always there whenever needed a great source of information invaluable information

The Diamond Blackfan Anemia Foundation is a great organization! It works hard to provide information and emotional support to the families that it serves. It also does so much to fund important DBA scientific research that would not get funded otherwise.

Parents supporting parents, researchers supporting researchers and parents, and doctors caring for our children and families. Diamond Blackfan Anemia Foundation is a community who works together to make a difference in the the lives of individuals with this rare bone marrow failure disorder. I can say as a parent I don’t know where my family would be today without this foundation’s guidance and support!

Im an adult DBA patient and have been living with this rear disorder for 38 years. At the time I was diagnosed my parents had no where to turn for help or support, and being the rear nature of this disorder even the doctors had very little to offer, I can't imagine receiving the news of having a sick child and have no where to turn. Now thanks to the tireless efforts of the DBA Foundation newly diagnosed patients, older patients, and there family's have place to turn for help, information on treatments, and most of all support. The DBA Foundation, although coordinating with specialist in the feld of hematology and researchers to help find a cure provides one other important key in our lives and our childrens lives. That is a sense of community or as we call it our DBA Family.

I dont know where to start in telling what this foundation means to me and my family. Since my son was diagnosed at 2 months old (now 6 yrs old) The founder Dawn and so many other families that are a part of this foundation have been MY foundation and my calm in the storm that caring for a sick child can bring. The love and support I found here have been amazing and friendships that will last a lifetime. If it wasnt for Dawn and the foundation I would have never known about the amazing doctors in New York to help guide our treatments and The National Institute of Health where we are going for transplant. Pretty much our whole treatment and path has been led by this foundation. I am forever grateful!!!

The DBA Foundation has been instrumental in ensuring we are providing the best care possible for our daughter. Without them, we would have continued on a treatment path that surely would have caused more damage than good years down the road. The support they provide for the families afflicted with this disease is incredible. Due to the rare nature of this disease, it is easy to feel like your family is alone in this fight, but with the DBA Foundation we soon found out we are NOT!

With less than 700 people in the U.S. affected by this challenging disease, there is little government support for the research needed to find a cure for Diamond Blackfan Anemia. The DBA Foundation - founded by DBA parents and supported by the generosity of DBA families - has done an extraordinary job in raising money to sponsor research and provide valuable information on patient care to families and doctors. Numerous lives have been saved through the DBA Foundation educational programs and today we find ourselves ever closer to a cure because of the research supported by the foundation. As a father of a child with DBA, it is an honor and privilege to serve on the Board of Directors.

Where to start the story of our son Mark, great doctors and the absolutely wonderful DBAF, is my dilemma. Mark was born on October 18, 1970 and it was one of the most special days in my life. We did not know how important our life's journey with Mark would be. His first Christmas was spent in the hospital for a blood transfusion. After that did not work for long Mark spent 27 days in Boston Children's Hospital which ended in his diagnosis of DBA. After many years of traveling to Boston and New York, many of them for research purposes, He decided to try a new procedure called, for the lack of a better title, a mini bone marrow transplant. He was the first DBA patient to try this and it worked. Even tough he was no longer anemic he always would be a DBA patient. This in turn led to a adorable young girl, who could not have a full bmt, to be cured of her anemia and save her life. Mark was so happy when he got to meet this beautiful child at Point Sebago, Maine at Camp Sunshine put together by the DBAF. From all the support our DBA families get from this wonderful caring foundation has come a close family fighting the fight as one. As a mother of a generation of children who did not know much of this awful blood condition, the knowledge that is now given to the families is priceless. The ability and caring of all the people who give from their hearts, whether is of their time or financial help, our DBA families thank you. I truly believe Mark was on this earth for a mission, to help our DBA families. Though he is no longer with us, the DBAF is and they are continuing the fight that Mark believed in. Please help Mark and the other DBA children by helping the DBAF, a truly caring and wonderful foundation.

Madeleine Lapierre, mother of Mark Lapierre , 10/18/1970-03/14/2013

I first learned of the Diamond Blackfan Anemia Foundation through a friend of mine who is impacted by DBA. I have followed the Foundation on Facebook and online ever since, and I am in constant awe of all of the hard work, dedication, and unceasing compassion this foundation has to help those who have been diagnosed and their families. The Foundation helps and connects people all over the world who are impacted by DBA, and is a source of information and support. It's not just a foundation...it's a family.

My son is 4 and he has DBA.We from Ukraine and very little information here about our disease so the DIAMOND BLACKFAN ANEMIA FOUNDATION is the only way for us to learn any information or news about DBA.This organization gives us hope and believe))))Thank you!!!!

At 5 months old my son Hunter who is 6 now was diagnosed with DBA so as you can imagine I was full of questions and wonder and wanted to educate myself in every way. Here is where I came to gain the knowledge I have now to aid in decision making for transplant. When people find out what he has I direct them here so they may explore and learn. Also to try and raise awareness. They go above and beyond to do what they can to come together to help our children and adults who suffer from this horrible disease in finding a cure!

This organization has done so much for my family and so many others that its benefit to this rare disease cannot be overstated. It is the major reason that any research is being done at all. It is the reason that so many of our kids are still alive. We are forever grateful that this Foundation exists.

DBA Foundation is an incredible organization. They have been so helpful to my family and me over the years as I've continued to live with DBA. I'm so grateful for their dedication to research and also providing us with information and support.

Our little 8 year old spunky monkey has Diamond Blackfan Anemia. The DBA foundation provides support, guidance, information...and often a shoulder to cry on. Having a child with a rare disease can be a scary lonely journey. Together we are DBA Strong!

I am 42 years old. Growing up my doctors suspected I had DBA, but I wasn't officially diagnosed until I became weekly blood transfusion dependent, almost four years ago. I felt so alone with this disease and then I found the DBA Foundation website. I soon learned that I was not in this fight alone! The foundation has given me so many things, information, contacts, support, and most of all the people I have talked to who have (and still do) supported me with their prayers, thoughts, encouragement. I know after talking for hours to Dawn that we are all one big DBA family. She gave me badly needed information so I could make a major life decision and I will always be grateful.

I have been through 2 bone marrow stem cell transplants and the DBA Foundation gave me the support I so desperately needed! I will never be able to express my appreciation.

Jodi

Incredibly friendly, hard-working and compassionate organization. I felt welcome the moment I connected with the head of the organization and know that I will continue to.

If it weren't for the Diamond Blackfan Anemia Foundation I would never have met the amazing people I have. They have truly brought together families with DBA from across the globe. I know that I would not be as able to withstand the challenges we face with our daughters health without the support from our DBA family. Not only that, they continue to find so much research for a cure. They have change our DBA world in more ways than I could ever explain. I am forever grateful for this organization. Without them, my family would be alone.

The Diamond Blackfan Foundation has been instrumental in giving my family support and resources for our daughters illness. We feel blessed to be able to count on them to help us!

I have lived in Cambodia for the last 20 years. Over the years, I have sponsored a number of orphans/abandoned children. One of these children, now four years old, has DBA. Because this condition is so rare (I don't know of another case in Cambodia), it took months and a number of blood transfusions before it was properly diagnosed. Following the diagnosis, I learned about the DBA Foundation and, through it, have been able to keep up with DBA research, treatment options (and hazards) and have gotten acquainted with a number of persons living with DBA. I don't know what lies ahead, but I know that I have a support network that can answer questions and offer suggestions when we need help even here in Cambodia. Thank you, DBAF!

The Diamond Blackfan Anemia Foundation has provided so much support for our family. Our son is 13 and was diagnosed when he was a baby. The DBAF and Dawn have provided me with knowledge and confidence to do what is best for my son. I know that they are always just a phone call away when I need it for advice or support. Quite often we get information from them before we get it from out Doctors or we have to share the information with our Doctors and our Doctors are amazing.

The DBAF supports research for Diamond Blackfan Anemia. It is amazing how much has been discovered about DBA in the past 13 years but sad and scary at how much we still don't know. The DBAF shares my concerns. Their mission statement is “to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to patient advocacy and providing support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.” I want a cure for my son! I also want to know that we are using the best and safest treatment for him and find even better ones. The DBAF supports us!!

My son has DBA and when he was born 10 years ago, there was a lot of dated information on the internet. It was scary for me as a parent, trying to find out as much information as I could about DBA and not knowing that the information I was reading was no longer accurate. When I found the DBA Foundation, not only did they comfort me, but they gave me the facts at that time and continue to keep me informed on new developments in our fight for DBA. That results on me being able to forward that information to my son's doctors, which helps them out because this disorder is so rare. I am a better educated parent because of the DBA Foundation which in turn allows me to be more active in the treatment for my son. I also love that it didn't matter that we are from a different country, I feel they are always there for me when I have questions or need support. So grateful for them.

The Diamond Blackfan Anemia Foundation has been an incredible blessing to our family. With their support and expertise, we have the resources to improve my son's medical care and quality of life. Through DBAF, we've connected with other affected families, ending the isolation we once felt. Most importantly, we have been personally touched by the research DBAF has funded. Those advancements have had tangible impacts on the quality of medical care my son receives. We would be lost without DBAF!

I and my son both have DBA and the insight and excellent advice that this foundation gives is priceless. Not only that the research that they fund is helping us get closer to treatment and a cure!

Incredibly professional and honest organization that does incredible work for the DBA community.

Our 2 year, 4 month old daughter was first rushed to the hospital with DBA symptoms at only 6 weeks old. The DBA foundation provides grants to researchers, connects and educates parents of afflicted children, offers support, guidance, and fellowship, and even helps those with DBA make very tough choices. When a child is the first in an extended family to have this disorder, even ones own family feels far away in terms of understanding and emotional support. The DBA foundation functions as a true family in the best sense of the word. When a child is doing well, there is celebratory enthusiasm. When a child falls gravely ill or dies, there is sincere mourning. And throughout it all, there is not only hope but continual, persistent effort to manifest a cure through raising of funds for research project after research project. The DBA Foundation somehow manages to be both professional and personal, objective and compassionate. We are desperately dedicated to saving our child's life -- and so is the DBA Foundation. I am so grateful for its existence!!

The Diamond Blackfan Anemia has been the best thing that ever happened to us. There have been many times that we felt alone and did not know where to toget answers. Dawn (the executive director) is so knowledgable and kind. She totally knows what it feels like when a parent is in need of answers. Thanks again DBA Foundation for being there to answer questions and give support.

The DBAF is a great organization. It has connected us with so many DBA families. Our girls health has been dramatically improved because of the resources provided by the DBAF. Ms. Baumgardner works tirelessly to provide families with information and support. I am very thankful.

DBAF is a lifeline for our family. We go to the DBAF for the latest on research and for personal support. Thank you DBAF for helping all DBA families find better treatment, research, and connect families.

I don't know where to start when I speak about the Diamond Blackfan Anemia Foundation and Dawn Hollstein-Baumgardner. I was introduced to DBA because my husband was a DBA patient. Over the 32 years that we had together he had a lot of ups and downs. Through the last few months of my husbands life the DBA family ( I call them a family because that is how they make you feel) have been there for us. They give support, answer questions and are a shoulder to lean or cry on if that is all that you need. I have made a lot of life long friends in the DBA family and I will always be there for them. I will always raise awareness about DBA and the need for funding and research. I learn so much from the Diamond Blackfan Amenia Foundation Newsletter that I received. Thank you to all who work so tirelessly for us and our families.

This organization is the key to my daughter's survival! It is the only resource I turn to for help and help is always there within minutes! DBAF will never stop looking for a cure and will always be there to help families in need of answers, hope, prayers, support, and guidance. I love seeing all of our donations being put to good use as I read about all of the research programs that have been funded through DBAF! With a disease so rare, I am incredibly thankful to DBAF for all of their efforts and resources!

DBAF has tirelessly raised awareness and provided funding for research for Diamond Blackfan Anemia. Our granddaughter suffers from this bone marrow failure. Even though we live in Canada, we are so thankful for DBAF and its dedication to help find a cure and help all those affected by DBA.

DBAF has provided our family guidance, information and confidence in the face of insurmountable fear. Without DBAF our son would not be as healthy as he is and we would still be struggling with this diagnosis. DBAF provided a guiding light in the darkest hour and continues to provide that light.

The DBA foundation is a critical resource for DBA patients and their families. My nephew has DBA and we rely on the DBAF for guidance, advice, research and support. Knowing we are not alone is an incredible feeling. Thank you to all foundation members and board for all you do.

The DBA Foundation has been there for our family from day one. They provided us with information and resources when I couldn't find any. The DBA Foundation works tirelessly to raise money for continued research to find a cure for this disease. They give support and care so much about all that are affected. Honestly, I can't even begin to express how much this foundation means to our family.

The DBA Foundation cares about its families, DBA doctors and DBA researchers! Without the Foundation's efforts to raise money and awareness great strides in research and family education would not be possible. Their dedication to finding a cure and supporting families is priceless. Without the DBA Foundation our families would not receive the support, education, guidance and resources they so desperately need!

The resources and support provided to my son and our entire family through the DBA Foundation are invaluable. Words cannot express my sincerest gratitude to the foundation. Were it not for the foundation, I would truly feel lost in this journey with my little boy. The foundation has been there for me since day one of his diagnosis and I have never felt alone or without support. I am so very thankful for Dawn and all of the foundation board and members.

If it were not for the work that the DBA Foundation has done, we would be alone in our knowledge about this rare disorder. Additionally, the work that the foundation does has created an invaluable support network that all DBA Families need.

My daughter has Diamond Blackfan Anemia. The DBA Foundation has been an invaluable resource to my family. The foundation has always taken the time needed to talk with us about anything we have needed from treatment options to emotional support. The foundation is also essential to acquiring the research funds desperately needed to find better treatments and ultimately a cure for this horrible condition.

DBAF has gave my husband and I the chance to meet others like him. It gives us information and a support group to understand DBA. We appreciate their hard work researching to find a cure and better treatments. Thank you so much for your hard work and dedication. You're loved by our family. God bless each of you.

This is an organization with a huge heart and little funding. Please take a moment to look at their website at www.dbafoundation.org to see all the good that they bring to the world.

Diamond Blackfan Anemia is an extremely rare disease. No two cases are alike. In some cases, it is completely a mystery as to where the disease originated from.

There is no cure.

There is hope.

You can make a difference today by allocating United Way funds to DBAF or hosting a fundraiser. We may be a small population but we work in communities around the world supporting the efforts of local blood banks as well as our disease. Please consider helping today.