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
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
The Diamond Blackfan Anemia Foundation (DBAF) and Diamond Blackfan Anemia Canada (DBAC) are joining forces once again to fund Johan Flygare, M.D., Ph.D.’s project entitled, “A novel group of kinase inhibitors for treatment of Diamond Blackfan Anemia.” The goal of this $35,000 project is to develop safer and more potent drugs to treat DBA. Ideally, these drugs would act by Continue Reading »Posted in: News, Research, Spotlight Stories
The Diamond Blackfan Anemia Foundation (DBAF) is pleased to support the hard work and research efforts of Steven R. Ellis, Ph.D. at the University of Louisville. Dr. Steve Ellis’ professional and personal commitment to DBA is immeasurable and deeply appreciated. Not only is Steve our dedicated (and unpaid) Research Director, who is working tirelessly behind the scenes, he also writes the DBAF’s e-newsletter Continue Reading »Posted in: News, Research, Spotlight Stories
Sometimes I feel like the odd one out, restricted by DBA. I just have to keep reminding myself that God wouldn’t bless me with this challenge if He didn’t think I could handle it. I don’t let DBA define me, I try to defy DBA.
And when the storm is over, you won’t remember how you made it through or how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. BUT…one thing is certain: When you come out of the storm, you won’t be the same person who walked in!
Nobody is guaranteed tomorrow. Just because you have a warning doesn’t make you different than anyone else. It doesn’t make a difference in how you live each day.
It has been seven years since DBA became part of our vocabulary. Our son’s diagnosis brought confusion, apprehension and despair. The discovery of DBAF is a stroke of serendipity. While even more tears were shed, these are now mingled with knowledge, understanding and, more significantly, hope. It will be through research that our son will be able to secure a brighter future.
