This President’s message is very personal and challenging to write. The first seven months of 2018 have been very difficult for many in our CHARGE community. Our CHARGE family experienced the loss of far too many amazing individuals with CHARGE. Every life is precious, and we grieve together as a community. It is important for everyone to know that the loss of a child, grandchild, sibling, relative or friend does not and should not signal the end of your relationship with the Foundation. You will always be part of our CHARGE family.
I remember sitting around after my son Ethan’s funeral with some of my closest friends from the Foundation. No one was going to ask, but it was on their minds. Would Jody and I stay involved? Would I continue to serve as president? Jody and I decided to increase our involvement with the Foundation. We honor our son through our commitment to help the Foundation.
Our Board recognizes that we can and should do more for our grieving families. We expanded our website to include a section on grief support for families that also provides resources and information about how you can help those who are grieving.
