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.
This charity saves lives. It brings together people who have had devastating news about their children. It wraps around them providing support and information. It supports a worldwide network of parents, doctors and outstanding researchers who support and provide hope. Not a penny is wasted.
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!
I have a daughter and two grandsons with DBA and I have learned so much from this foundation in the last few years something I didn't have when my daughter was growing up. They put so much effort in getting some research done to find a cure. Thank you for every thing you guys do.
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.
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.
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!