Family Centered KTRN

Attendees of 5th annual KTRN meeting

The Krabbe’s Translational Research Network (KTRN) meeting, was held March 4-6th, 2015 at ‘Tween Waters on Captiva Island, FL. Recognizing previous progress and celebrating the 5th anniversary of this TLOAF signature grant sponsored meeting, a new dimension was added; a select group of parents of children born with Krabbe’s disease. The purpose of this new group is to fill a much needed market gap, previously identified through extensive research.

Paul and Sue Rosenau Co-Founders, and board members Stacy Pike and Bob Hoffman participated in this exciting meeting, along with TLOAF research consultant, Micki Gartzke.

The Foundation keenly believes engaging families and other stakeholders in creating a family-centered network: to develop a patient advocacy group that can raise public awareness of Krabbe disease and play a key role in all levels of educational opportunities and increase participation in studies of potential new treatments that could benefit affected children; and to form a governance structure and six subcommittees to address the most important topics for the network and develop tasks and deliverables for the meeting and the following 12 months. This new Family-Centered KTRN (FC-KTRN) will help to contribute research ideas, share data, adhere to protocols and participate in observational studies and randomized clinical trials for Krabbe’s disease.

The Foundation is excited to see the progress this group will make in all areas, most especially right now is the vital need for the Krabbe’s Tissue and Brain Repository which will be housed in the Pittsburgh Brain Bank, developed under the direction of Dr. Maria Escolar, et al.

The 2016 meeting will once again be held at ‘Tween Waters on Captiva Island, FL and will be a scientific review similar to those held in previous years.