Dealing with Death

Groups often struggle with how to provide for families who have lost a loved one to the condition and still offer hope to the families who are struggling to hang on to hope. Though not as dramatic, the same tension is felt by many groups when the newly diagnosed hope for a mild course of the condition and the veterans need support because of the severe changes in their lives. These losses require a delicate touch. Lay advocacy groups are often able to draw on their members' experiences and provide both kinds of support and the continuum in between.

Whether your organization supports a genetic condition that leads to early death or does not have any impact on life expectancy, you may wish to consider two aspects of preparing for the death of a member: acknowledgment of the passage and support opportunities for family members. Although few of us are enthusiastic about creating procedures for this type of event, having a procedure or policy in place can give a comforting sense of knowing, at least, what to do next.

Acknowledgment of death can take two primary forms: immediate responses on the part of the organization (such as a card or gift to the family) and/or memorial activity in a public forum, perhaps at a regularly held meeting or as an announcement in your organization's newsletter.

Support for grieving families can take a variety of forms, too, from a simple personal expression of condolences from a group member to substantial commitment of time and resources to provide active support to family members. Where your group falls in this continuum will likely be influenced by the severity of the condition and may be influenced by the cause of death. We don't mean to suggest that a car accident is less deserving of support for survivors than a death related directly to the condition your organization supports, but it's reasonable that your organization make decisions about how much effort it is able, fairly, to offer in this area.

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