Families on a Mission


Many families that I know divide up their responsibilities among members in the house. It may not be distributed evenly but each person usually has their role to play. For EB families, it is no different and that can mean not only house duties but care for the loved one diagnosed with EB and promoting EB awareness.


There are several ways that family members both immediate family as well as extended family can support the EB community within their own circles and during their daily interactions. It can be anything from hosting fundraisers or EB awareness events in their neighborhoods to finding unique ways to donate to organizations focused on supporting EB families and research. For example, those who frequently shop online can seek out nonprofit matching promotions such as Amazon’s Smile program which enables the user to choose what registered nonprofit on the site they want to benefit from their shopping dollars upon login. Other vendors including Gorjana Jewelry and NuSkin enable shoppers to purchase merchandise and see dollars donated directly to a specific EB organization.


Older siblings in an EB family can educate other children and teens through conversations or school awareness events about epidermolysis bullosa to help cultivate an informed and supportive environment. Extended family members such as aunts and uncles, grandparents or cousins may be able to lend a hand to support parent caregivers by providing backup care and opportunities for stress relief, something critical to any caregiver.


If you are part of an EB family, what role do you play? And consider this: is there something more you can do to support others outside of your family and within the EB community? Please comment here and share your own thoughts on the various roles people connected to or part of an EB family can play. We’d love to hear from you.