Encouraging and supporting research is one of the Israeli Wiskott Aldrich Syndrome Association primary goals.

 

In a rare genetically inherited disease like WAS the key to a viable cure lies in analyzing the complex mechanisms which are related to the functionality of the WASp protein within the human body. The reasons underlying its scarcity or its becoming dysfunctional need to be unveiled. Without sufficient information patients are forced to undergo Bone Marrow Transplant (BMT), the only curative treatment available to date. BMT is a complex procedure which carries numerous potential risks and complications. It may be fatal, and is not necessarily the optimal choice for patients with lighter symptoms, namely X-linked thrombocytopenia (XLT). 

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There are very few research groups in the world that study Wiskott Aldrich Syndrome and related protein. One of the Israeli Association's goals is to encourage setting up a local research group that will promote such research and will take advantage of the local knowledge base in interfacing research disciplines such as blood clotting, platelets, stem cells, related proteins and more.

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The Israeli Wiskott Aldrich Syndrome Association started to map WAS research efforts globally. We learned that all research groups deal primarily with the immunological aspects of the syndrome. The hematological aspects, related to the dangerous bleedings resulting from the low platelets count, (Micro-thrombocytopenia) were hardly studied. Being parents to WAS children, who nearly 100% of whom are at a constant life threatening state due to their low platelets count, we chose to try and promote the setup of an Israeli research group that will focus on the hematological aspects. The primary research them we aim to promote is Micro-thrombocytopenia in WAS patients, which was not studied yet in the world.

 

In this framework, and further to the deliberations of the WAS research forum, two research proposals were presented by Dr. Mira Barda Saad of Bar Ilan University, an expert on WASp protein research and by Dr. Varda Deutch, a platelets specialist from the Tal Aviv Sourasky Medical Center. The Israeli Association is currently seeking funding for the execution of these two research proposal.