The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 12th national family retreat. This retreat will take place during the week of July 7 – 12, 2019 at Camp Sunshine, which is located at Lake Sebago, Maine. Air carriers fly into Portland, Maine. Ground transportation is provided by Camp Sunshine to the campus. Camp Sunshine has proven to be an unforgettable experience Continue Reading »Posted in: Camp Sunshine, Misc, News, Spotlight Stories
As the Executive Director of the Diamond Blackfan Anemia Foundation (DBAF), it is both my professional responsibility and personal passion to fulfill the DBAF’s Mission Statement: The mission of the 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 Continue Reading »Posted in: News, Spotlight Stories
Oh… Camp Sunshine… we are so very grateful! Through the generosity and compassion of our friends at Camp Sunshine, DBA families and patients from around the world met in Casco, Maine from July 9-14, 2017. Our eleventh family meeting was a huge success! As presentations are received and approved by the presenters, they will be posted to our website here: https://dbafoundation.org/families/camp-sunshine/Posted in: Spotlight Stories
The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 11th national family retreat. This retreat will take place during the week of July 9 – 14, 2017 at Camp Sunshine, which is located at Lake Sebago, Maine. Air carriers fly into Portland, Maine. Ground transportation is provided by Camp Sunshine to the campus. Camp Sunshine has proven to be an unforgettable experience Continue Reading »Posted in: News, Spotlight Stories
The 14th Diamond Blackfan Anemia International Consensus Conference was a huge success. It is a privilege to continue the meeting founded and previously sponsored by Marie Arturi and the Daniella Maria Arturi Foundation. The DBA Foundation is grateful for the support of DBA Canada, the Daniella Maria Arturi Foundation, DBA-UK, Captain Courageous (Australia) and the Resource Capital Funds Foundation. The cooperation Continue Reading »Posted in: News, Research, Spotlight Stories
When I was diagnosed with Diamond Blackfan Anemia back in 1970, I was lucky enough to have a doctor that knew about DBA and knew what he was dealing with. I was put on a course of treatment and throughout the years, the doctors did what they could. But having DBA was a very isolating experience for my mom and my dad Continue Reading »Posted in: Families in the News
It means more than you could ever imagine to myself, my brother and to the rest of my family that you have come here to collaborate with great minds in order to work towards a cure for DBA. As some of you may already know, I was diagnosed with DBA when I was seven weeks old, and I have never Continue Reading »Posted in: Families in the News
By: Steven R. Ellis, Ph.D. Dateline: August 21st 2015, Brussels Belgium Ding…………….that’s odd, it is 3:00AM back in the US: who would be e-mailing me now? Ah, it’s Jeff Lipton; who happens to be sitting immediately in front of me listening to a talk at the 10th triennial Conference on Ribosome Synthesis. The e-mail is sent to all members of Continue Reading »Posted in: News, Research, Spotlight Stories
By Vijay G. Sankaran, M.D., Ph.D. As both a pediatric hematologist caring for patients with blood disorders and a scientist working to improve our understanding of the genetic basis of these diseases, I spend a large fraction of my time thinking about Diamond Blackfan anemia (DBA). However, while I have always found DBA to be a fascinating disease to study Continue Reading »Posted in: News, Spotlight Stories
By Casey Sears Wilson It is difficult to summarize an experience that we had no idea would be so impactful. However, I want to take the time to do so in a way that will permit anyone willing to take the time to read this to step into our grateful shoes and also to recognize the many gifted people that Continue Reading »Posted in: News, Spotlight Stories
I am here. I am in the present tense. I’m not always here, and sometimes here is a very difficult place. Sometimes it is a labyrinth, or a Minotaur, or a rope I can neither let go of nor follow. It’s hard to find the right words, but I guess I would say that it’s something like feeling the floor. And that it is my privilege to feel it. -Meg Howrey
Having DBA has taught me to not give up the fight and to do the best that I can. The DBAF has become more than just a source of friends and knowledge, but a family of support through the bad and the good.
This is David at 1 month old weighing almost 2 pounds. DBA changed our paths in life, but I will ALWAYS be there to hold his hand for he holds my heart.
