Family Gathering a Huge Success!

Family Gathering a Huge Success!

Family Gathering a Huge Success!

On July 20-22, Cure AHC hosted a Family Gathering in Boston, MA that was a huge success. Over 60 people attended, from several countries. There were many more that attended “virtually” via our stream on Facebook Live. The Opening Remarks, and morning sessions about the AHC Clinics and Natural history study are available (see below), along with the evening presentation from Tony Pena on advocacy to government officials, presentations on improving quality of life from Friday afternoon, and the Saturday morning sessions of Q & A, fundraising, and our strategic plan.

While we did live stream the research presentations, those could not remain online, nor can any discussion or commentary about those can be allowed to exist online, lest it jeopardize publication, essentially invalidating said research and wasting precious time and money. One exception is the ATP1A2 presentation, which is already published, and is included. We hope you find the videos we are able to share to be very informative.

Attendees also had opportunity to interact with Dr. Mikati & the Multidisciplinary AHC Clinic Team from Duke, as well as opportunities to meet Dr. Swoboda and the MRI Study team from Wake Forest University. Unfortunately, no one from Vanderbilt could attend, but their brochure is available here.

Cure AHC President Jeff Wuchich concluded the meeting by presenting a draft Strategic Plan for Cure AHC, casting a vision an specific planned initiatives for the next two years. You can see the video below and view the PowerPoint presentation here. Keep watch for a poll to help determine the location for our next family gathering in 2019.

Cure AHC Strategic Plan

 

Fundraising- Easier than you Think!

 

Answering your Questions- Stacie Confair-Stringer & Dr. Mikati

 

Duke Guidelines for Care of AHC Symptoms

 

Bill Krenn Part 1

 

Bill Krenn Part 2

 

ATP1A2 Presentation

 

Tony Pena – Advocating for AHC with Government Officials

 

Dr. Swoboda presentation & IAHCRC Natural History Study  

 

Duke AHC Clinic

 

Intro Remarks

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