Family Meetings

An important part of our mission is to support the AHC patients and their families. One of the ways we do this is through our biennial Family Meetings.

The first Family Meeting was held over a weekend in 1999 in which 14 families participated with Dr Ken Silver, the only AHC physician in attendance. Through the years we have held the meeting in Central Illinois, Salt Lake City, UT,  Boston, MA,  Chicago, IL,  Raleigh, NC, San Francisco, CA and Minneapolis, MN. The idea of moving the family meetings around the country is so that more families can come, including those limited by mobility as well as cost. It has grown to over 40 families in attendance now from across the globe and with participation by the AHCF Board and numerous AHC medical experts.

There is always a group of new families attending who are both grateful and overwhelmed by the information they learn, but also by the care and support of other families.

Lynn Egan states “Imagine having the opportunity to attend a meeting where you as a parent and your child are not alone.  You can discuss, compare, cry, challenge, and vent with each other.  Each family has a ‘million dollar baby’ and with it does not come wealth and notoriety.  It comes with day to day trials, fears and sometimes despair.”

It is an incredible opportunity to catch up with old friends and meet new ones, hear from researchers, chat with doctors, and learn from everyone attending the meeting. The planning committee spends many months working hard to make certain that the meeting is educational and inspirational and meets the needs of our families. Many families have formed connections and friendships that stretch across the country and the world.

The meeting has exciting additions every year but these are the goals of the AHCF Family Meeting:

In the 3 days prior to the meeting the Pediatric Motor Disorders Research Clinic Team led by Dr Kathryn Swoboda, conducts AHC clinical appointments.  Appointments can be scheduled for any of the following specialties at no cost:

  • DNA testing
  • Genetics counseling
  • Inclusion in the AHCF Clinical Registry and Biobank
  • Updating patient history and physical data from previous meetings
  • Physical therapy assessment
  • Physiatrist appointment including quality of life scales
  • Neuro-Psych evaluation
  • Private session devoted to patient question and answer period with an AHC expert

Benefits of attending the meeting: Bring your family and socialize with the largest gathering of AHC patients in the world.

  • Informal opportunities to speak with world renown AHC experts outside of a clinical setting
  • Meet the AHCF Board of Directors
  • Socialize with AHC families from around the world during an ice cream social
  • Chat with other families and physicians during the “Meet and Greet” social that kicks off the conference and the AHCF group sponsored luncheon.
  • Join other AHC children for play time while parents meet next door.
  • If this is your first meeting, or you’re traveling by yourself, we connect you with a friendly partner at the meeting.
  • Experts scheduled to share their insights on AHC topics

Please review presentations, images, and information of our previous meetings through the links below.  Hope to see you at the next one!

Family Meeting 2018 – New Jersey

Family Meeting 2016 – Indianapolis, Indiana

Family Meeting 2014 – Minneapolis, Minnesota (Revised presentation coming soon)

Family Meeting 2012- San Francisco, California (Revised presentation coming soon)

Family Meeting 2010- (Revised presentation coming soon)

Family Meeting 2008- (Revised presentation coming soon)