Strategic Planning for 2014- Co-Founders’ Visit to Duke University

Strategic Planning for 2014- Co-Founders’ Visit to Duke University

One of several reasons why Cure AHC exists is to take advantage of close proximity to one of the leading researchers for AHC- Duke University. Renee & I got a chance to take advantage of that closeness late last week. We visited the Duke University Campus Thursday, December 12 to meet with both the AHC Clinic Director Dr. Mikati & some of his staff, but also the Research team that Dr. Goldstein leads.

The purpose was to review the great accomplishments of the past year that we have forged together, and to discuss strategy for 2014 and beyond.

What impressed us most about the day was the passion everyone has about getting to the cure for AHC. The Clinic team was eager to hear all our feedback, and there will be enhanced services and advice coming in 2014, not only for new visitors to the AHC Clinic, but also for those who have already been!

We got the chance to tour the mouse lab, and the capabilities and resources Dr. Mikati has there are quite impressive. Joining us for the tour was Dr. Arsen Hunanyan, a Post Doc on The Mouse lab team. Dr. Hunanyan actually did his PhD work on ATP1A3!  The staff took great care to explain to us the significance of the equipment and the expected use and results in research.

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Then we had a very enjoyable lunch with Dr. Erin Heinzen, Dr. Mignon Keaton, & Nicole Walley, from the Center for Human Genome Variation. They spoke at length about their fascination with AHC and their determination to help us get answers!

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We got to tour the many facets of the genetics lab, including the super-power next gen sequencing equipment and other cutting-edge equipment that will help the lab deliver positive results in the advancement towards the cure for AHC. Special thanks to Brian Kreuger, Josh Bridgers, Ken Cronin, Melodi McSweeney, Xiaodi Yao, & Yi-Fan Lu for taking the time out of your busy schedules to show us around and educate us on the importance of each aspect of the lab.

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We concluded the day with an excellent meeting with Dr, David Goldstein. Together we will forge a strategic plan for the coming years that we believe will attract the major sponsors we need to bring the plan to fruition. Dr. Goldstein made it clear to us how what they have planned fits into the collaborative efforts around the world as covered in the Rome Symposium, so we left feeling that the team is well poised to deliver results.
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We at Cure AHC look forward to 2014 and the big things in store!

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