Connections and Collaboration
I’ve been in DC this week for the US Conference on Rare Diseases. I must say that this conference ROCKS! Connections made with all sorts of people that will be of potential benefit to our efforts to treat and cure AHC: Key contacts in the FDA, NIH, SSA, Biotech, Academia, and other Foundations who have traveled the road we will need to travel on the way.
There are so many things I have learned here that will help shape the strategic plan for the Foundation, that I would not be able to do them justice here in this blog. Suffice to say that this was absolutely a conference we needed to attend.
If there is one theme that would characterize the Sessions I have attended (all geared for Patient Advocacy groups like ours) it would be that Collaboration is Essential. We as parents must collaborate as much as possible for we are on the front lines of understanding. Our Board Members must actively collaborate both on strategic and tactical matters to handle both immediate and future needs. Our researchers must collaborate to accelerate understanding. We must collaborate with our sister foundations and any other organizations (including government and industry) where we can to multiply our efforts. These are the things we will do in the months ahead.
There is one more day of sessions to go still for the conference, then a welcome trip home. Matthew has missed his daddy and Renee has missed her husband. I have missed them dearly as well of course.
Yours in Service,
Jeff
