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Diamond Blackfan Anemia Foundation

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Nonprofit Overview

Causes: Health, Medical Research

Mission: The mission of the Diamond Blackfan Anemia Foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

Target demographics: Diamond Blackfan Anemia patients and families

Direct beneficiaries per year: support Diamond Blackfan Anemia patients, families and research.

Geographic areas served: worldwide

Programs: information, educational materials, support and advocacy. We sponsor international scientific conferences and family support meetings, as well as research grants for approved research projects. Our Facebook page is https://www.facebook.com/dbafoundation

Community Stories

57 Stories from Volunteers, Donors & Supporters

Kavroman

Volunteer

Rating: 5

We as a family owe the Diamond Blackfan Anemia Foundation a great debt of gratitude for the lives of our sons. The DBAF’s Executive Director, Dawn Baumgardner, is the founder of the DBAF as well as its heart and soul. She is the source of updated information and infinite comfort to the families; she is the encourager of researchers and the voice of the families to them. She has personally counseled us, encouraged us, cried with us and sternly advises us when she knew we were going down the wrong medical path for our sons. Dawn leads the Foundation with the total passion and dedication that only a mother who has two sons afflicted with DBA could have. I shudder to think what the fate or our boys would be without her.

Previous Stories

Board Member

Rating: 5

The Diamond Blackfan Anemia Foundation has literally saved our sons lives . The Executive Director, Ms. Baumgardner, stays up to the minute on protocols, research and treatments and it is only through her encouragement that we dug further into our boys ferritin levels and found that they were at life threatening levels. She has also been the voice of calm, encouragement, support and solid information at the end of the phone for us as well as any family member who calls her - from any where in the world and at any moment they need support. The Foundation also collaborates with and funds the research of the top researchers world wide. The Foundation is also made even better by a brilliant and highly principled Medical research consultant. This Foundation is the backbone of DBA family support, information and research funding.

Debbie B.6

Client Served

Rating: 5

It's so hard to put into words what the Diamond Blackfan Anemia Foundation means to us. When your child is diagnosed with a very rare, life threatening medical condition all you want is to find information and others who can understand what you are going through. The DBA Foundation has given us that and so much more over the last 15 years. They provided valuable resources and contacts for us to reach out to for guidance and support. They educated us on what DBA was and helped us ask the right questions when seeing doctors. They helped us connect with other families who are going through the same thing and who have become our DBA Family. They are one of the major sources of funding for research into DBA which has led to advancements into better therapies, treatments and answers for us families. Without the DBA Foundation, I don’t know where we all would be today. They have given us hope that one day a cure will be found. Until then, we will continue to support and love the DBA foundation and we hope you will too!!

General Member of the Public

Rating: 5

Hi, my name is Terri-Lynn Hart and my 14 year old daughter is Grace. Grace has Diamond Blackfan Anemia. She is transfusion dependant and on chelation daily. Because of the Diamond Blackfan Anemia Foundation I am kept up to date on all new things going on in the medical world. I have learned so much because of this foundation and its amazing to know I can reach out for support at any time. Being from Newfoundland, Canada we are quite isolated. As well there are only 2 known cases in my province. As a parent of a child with DBA it is so reassuring to know that this foundation is there and I'm not alone. I believe because of DBAF my daughter is striving. DBAF is a wealth of knowledge that I can bring back to my daughters doctors so they can help her live life with DBA to the fullest. Thank you so much DBAF for all you do for our DBA family.
Sincerely
Terri-Lynn & Grace Hart

janetgp

Client Served

Rating: 5

AMAZING. Being diagnosed with a rare disorder was overwhelming to say the least. I felt lost and scared and terribly alone but after finding the DBAF I felt a huge sense of relief come over me. I can’t even really explain the feeling but just knowing they were there To help, support , and explain made the world of difference. Not sure where I would be in this journey without them.

Previous Stories

Client Served

Rating: 5

I don't know where my family would be without the DBA Foundation. Dawn (The Executive Director) has be instrumental in providing our family with ongoing support. Her knowledge and expertise in the field of Diamond Blackfan Anemia has made her my number one "Go To Person" when i need reliable and accurate information. Without the foundation many families would be missing out on vital and up to date info.

Rebecca Pratt D.

Board Member

Rating: 5

Rare diseases require extraordinary efforts and dedicated heroes. That’s the DBA Foundation & it’s Executive Director Dawn Baumgardner. Thanks to the DBAF & Dawn, there is hope for a cure in my daughter’s lifetime!

General Member of the Public

Rating: 5

Most amazing charity that there is always there to support us whenever needed, they are our second family and the only people that truly understand how dba can effect us all differently both emotionally and physically they are our lifeline without them the world would be a dark place.

Volunteer

Rating: 5

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.

Eileen R.

Client Served

Rating: 5

Always there day or night. An international community that became family. World experts working together. Coordinated so that every penny and piece of equipment accounted for. Lifesavers.

Previous Stories

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

The Diamond Blackfan Anemia Foundation is a life saver for families affected by this rare bone marrow failure. It was founded by parents who work tirelessly to raise awareness and to secure funds for further research. Lives are being saved because of the dedication of this group of people who will stop at nothing until a cure is found.

Previous Stories

Donor

Rating: 5

The Diamond Blackfan Anemia Foundation provides much needed support to families who have had this rare disorder touch their lives. Donating to this worthwhile cause helps to provide much needed funds to to ensure that research continues so that a cure can be found. It warms my heart to know that donations go directly to help this non profit reach their goals.

1 Caroline Butler K.

Client Served

Rating: 5

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!!!

Katie113

Client Served

Rating: 5

I truly can't imagine a better charity. The wealth of information we've received from the DBAF has been life-saving. We have three daughters with DBA and would have been so lost without their help and constant support. We are so grateful for all they have done for our family and the DBA community.

Previous Stories

Client Served

Rating: 5

I don't know where we would be without the Diamond BlackFan Anemia Foundation. The DBAF has connected us with the experts in DBA and provided us vital information on the disorder. The DBAF has provided our local hematologist with the latest treatment options and guided us through procedures, surgeries, and long-term treatment. Both of our daughters quality of life has been greatly improved because of the DBAF. Ms. Baumgardner is absolutely amazing and goes above and beyond to help families with DBA. She is truly saving lives. We are so grateful for the DBAF!

2 Vickie10

Client Served

Rating: 5

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!

1 Anthony51

Board Member

Rating: 5

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.

1 Madeleine L.

Client Served

Rating: 5

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

General Member of the Public

Rating: 5

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.

Board Member

Rating: 5

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!!!!

Ashley118

Client Served

Rating: 5

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!

Client Served

Rating: 5

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.
Aline Bernard.