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Below are descriptions and locations of our past meetings. All meetings are slightly different because of their location, families attending, and presentations that year. However, they are all the same in their value to connect our families and friends for life.

2021 – Virtual Meeting (COVID accommodation)

Our virtual meeting was a first for the Foundation. Despite COVID restrictions, we pulled off a successful 2-day meeting with presentations from our lead projects, behaviorists, and financial planners.



2018 – New Jersey

Our 12th Family Meeting was in Iselin, New Jersey. Themed “Making Waves for AHC,” it highlighted 39 “AHC Voices ” posters of the AHC kids. Families from 10 states and six countries attended. The Dr. Silver award was given to Mark and Lynn Egan for their many years of dedication. Research news, estate planning, sibling session, and a patient/doctor roundtable were held. A special collaborative meeting with Cure AHC discussed cutting-edge gene therapy! Families’ favorite fun event was an Ice Cream social with a live band!

2016 – Indianapolis

Indianapolis hosted the 2016 meeting with the theme “Celebrate Our Kids”. Families could walk downtown and visit the city’s many parks from their hotel, including beautiful Monument Circle, which was the stage for our group photo with over 140 family members, AHC kids, docs, researchers, and speakers! It was also the first year we live-streamed the presentations to families around the world who were unable to attend!

2014 – Minnesota

Minneapolis, Minnesota, hosted our 2014 meeting near the mall of America. The meeting discussed the road to clinical trials, a new collaboration between Vanderbilt and Northwestern Universities, as well as an important workshop directed at forming a consensus on definitions and outcome measures for clinical trial use. 21 experts shared insights into AHC, 42 families attended from the U.S. and as far away as Australia and Africa. Families enjoyed the time to socialize, and for the first time, we recorded the sessions to be viewed by those who could not attend!


2012 – San Francisco

A very ambitious family meeting was held in San Francisco at the end of June. Internal meetings were held with the AHCF board of directors, the AHCF Medical Advisory Board, and the International AHC associations. Families attended from 7 different countries. Panels of AHC young adults and a sibling support discussion were highlighted.



The following Family Meetings and early Symposiums set the stage for our growth and development. Starting in 1997, they are an important part of our history!

  • 2011 – Raleigh, North Carolina
  • 2008 – Chicago, Illinois
  • 2006 – Montreal, Canada
  • 2005 – Boston, Massachusetts
  • 2003 – Salt Lake City, Utah
  • 2000 – Midwest Gathering – Illinois
  • 1999 – Rockford, Illinois
  • 1997 – Woodinville, Washington
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