Always Remembered

As we approach the 2018 Family Conference on Holoprosencephaly, we want to share with you how we will honor and remember those we love who have passed away with HPE.

As you may know, at each of our past family conferences on HPE, we have had a memorial balloon release. The balloon releases are lovely and special for all of those involved, but we also want to be mindful of our environment and the harm that releasing hundreds of balloons can cause to wildlife.

Instead of a balloon release, all in attendance will blow bubbles into the air in memory and celebration of the children who are no longer physically with us.  This is why our new logo is shaped like a bubble.  Do you see it?


In addition to blowing bubbles, it is our desire is to conduct a memorial ceremony at the conferences where we can read the names of our children in tribute to the impact they have had on all our hearts. We have heard of an old Jewish proverb that says a person dies two deaths. The first is the physical death; the second is when that person’s name ceases to be used. We don’t want that to happen with our loved ones, so our conference agenda will include “Memorial Ceremony and Reading of the Names”.

boardIt is also our desire to create a physical memorial that is tangible and lasting, so we commissioned a special board from which will hang the names of each individual who has passed away with HPE.  This memorial board will be on display at our conferences and will be incorporated into our memorial ceremony.  When the conference is not in session, the board with its names will be on display in the Families for HoPE corporate office and names will be added when necessary. (Although we sincerely desire that there would never be a reason to add additional names to the board.)

We want to ensure that no names have been overlooked, so please view the photos (grouped according to the first letter of the child’s first name) and let us know if your child’s name should be added to the memorial.  You may submit his/her name using our online form or by sending an email message to 

Thank you for your support of this special project.


4 Comments on “Always Remembered”

  1. I am from thw old email list to and still know a lot of the names of the angels.
    I find this memoryal so beautifull.

  2. I remember so many of these names from my early days on the HPE Yahoo group. It’s so fitting that we will be honoring them. And I appreciate the enviornmentally-friendly bubbles. They are a love of so many kids!