Updates

March 17, 2022

David's 30th Birthday

When we start to see green shamrocks and leprechauns, we know that it is almost David’s birthday. Today, March 17th, 2022 would have been David’s 30th Birthday.

As many of you know, David had acquired Adult (Secondary) HLH, which is a very rare disease. After David passed away, we made a pact to always tell any new doctor we meet about HLH. Many physicians, nurse pracitioners, and caregivers are unfamiliar with the disease. These knowledge gaps have led to under-diagnosis and delayed diagnosis with poor outcomes, and many Adult HLH patients die undiagnosed. This fact is what motivated us to start this foundation. There is a great need to educate the medical community about this orphan disease so more patients can get the treatment they need.

We are pleased to announce that we are in continued discussions with Dr. Nancy Berliner, Chief of Hematology at Brigham and Women’s Hospital in Boston, MA to establish The David J. Kabakow Lectureship. Guest lecturers from around the world will be invited to Brigham to talk about HLH. It will also be taped by the Brigham Audio Visual Team and made available to other experts and professional associations, and to the David J. Kabakow Foundation to share with supporters via the Foundation’s website and other digital communications.

Our mission is more awareness and quicker diagnosis of Adult HLH. This annual Lectureship will require us to raise additional funds to meet the necessary requirements of the Lectureship.

Please help us educate the medical community.

Sincerely,

Robin & Mark Kabakow

October 23, 2021

A Message From Robin and Mark Kabakow

October 23rd, 2021 is the 6th anniversary of our son David losing his battle with Hemophagocytic Lymphohistiocytosis (HLH). We have created the David J Kabakow Foundation in hope of raising funds to help educate the medical community about this rare disease, and secondly to help fund research of adult HLH.

Since the foundation's launch in March of this year, we have been able to connect with Dr. Nancy Berliner at Brigham and Women's Hospital in Boston. We first met her at an HLH Conference at Cincinnati Children’s Hospital, which is the leading authority on diagnosing and treating Childhood HLH. At the conference we heard Dr. Berliner’s presentation and her focus is on Adult HLH. Dr. Berliner has agreed to partner with us to help us carry out our mission of education and research of Secondary Adult HLH. Prior to COVID-19, in addition to her other responsibilities, Dr. Berliner flew around the country making presentations to medical professionals (Grand Rounds). We have chosen to work with Dr. Berliner because she is one of the leading doctors in the field of Hematology and one who specifically has interest in researching Adult HLH.

Dr. Nancy Berliner

Dr. Nancy Berliner, the H. Franklin Bunn Professor of Medicine and the Chief of Hematology at the Brigham and Women’s Hospital, in Boston, MA. She received her medical degree from Yale Medical School, and obtained 23rd training as a Resident in Internal Medicine, Internal Resident Chief Resident, and Hematology Fellow at the Brigham and Women’s Hospital. She then spent 20 years on the faculty of the Yale University School of Medicine, where she rose through the ranks to Professor of Internal Medicine and Genetics. She has broad clinical interests in both classical hematology and hematologic malignancies. Her research is focused on the regulation of neutrophil-specific gene expression and its disruption in myelodysplasia and acute leukemia, and on the pathogenesis of anemia in the elderly. She has also become a world expert in the clinical features of Secondary Hemophagocytic Lymphohistiocytosis (HLH).

Dr. Berliner has served on the Editorial Boards of Blood, the European Journal of Hematology, and the American Journal of Hematology. She received the Stohlman Prize from the Leukemia/Lymphoma Society of America. She is a member of the National Academy of Medicine, the American Clinical and Climatological Society, the American Society for Clinical Investigation, the Association of American Physicians, and the Interurban Clinical Club, and is a fellow of the American Association of the Advancement of Science and the American College of Physicians. Dr. Berliner is the author of more than 150 Original articles, reviews, and chapters.

At dinner

Cutting birthday cake

David looking

Dr. Berliner