Welcome to AHC 365!

Welcome to AHC 365!  The title speaks for itself… we deal with the effects of AHC each and every day.

It has been a few days since everyone returned home and I hope your travels were uneventful.  As always, I reflect on the success of the family meeting and this meeting was truly amazing!!  I love reconnecting with families, meeting new families and I am always humbled by your presence. The Family meetings leave me feeling energized and always strengthen my commitment to the AHC Community.  I look forward to working with you, continuing to raise awareness and fundraising for research… WE WILL find a treatment and ultimately a cure for AHC.

Attending a family meeting brings forth many emotions:  the excitement of meeting others who understand,  a better knowledge of the disorder, perhaps apprehension of seeing other children with AHC, and perchance sadness and a fear of the future.  All of these emotions are normal and expressed by many.  One mom told me, “I feel so empowered – empowered to now return home and educate and better explain what AHC is to my family and friends”.

For those of you unable to join us, the videos will be available in the next few weeks.  There are several presentations that will not have videos available due to submission of work for publishing and another for copyright issues.  However, the videos will be made available at a later date and summaries will be provided.   Whether you attended or not,  you may have questions that were left unanswered so please feel free to contact any board member or myself with any questions, concerns or suggestions you may have.

Life has a way of taking over and as each day passes, our days together fade.  However, know that you belong to a greater family and our children and our desire for a treatment connect us.  We are a community, a team and together we have ONE MISSION.  END AHC!

Have a safe and Happy 4th of July!

Respectfully yours,

Lynn Egan

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