A Season of Giving

This time of year brings people together as they travel across the country to meet up, enjoy a family meal and gather for religious holidays. During this time, we may be inundated with requests to give back and volunteer. I’ve always been impressed with how generous and giving members of the EB community are in supporting each other year-round. The holidays remind us that we are not alone and that others may be in need of a helping hand. And we’d love nothing more than to see members outside our EB community embrace this giving spirit all year to support the patients, the families and the caregivers that make up our community.


So if you have any friends or family who may be expressing an interest to get more involved in championing a good cause or especially, if they indicate a desire to support one of your favorite EB-focused organizations, remind them of these various ways their family (and yours) can continue to help the EB community not just during this festive, giving season but throughout the entire year.


  • Host a neighborhood or city-wide fundraiser or pitch in to assist with one.
  • Volunteer to support a favorite EB organization and reach out to that group to find out specifically where there are unmet needs.
  • Develop EB awareness campaigns and contact local media and area civic groups to seek opportunities to promote these campaigns.
  • Use social media accounts to feature links to EB-related headlines and important information to educate friends and colleagues.
  • Talk with local businesses about being part of an effort to raise awareness and funds through their donation of a small portion of their profit proceeds on a given date in exchange for publicity.
  • Provide a local EB family direct support in the form of fundraising dollars raised.
  • Learn basic wound care duties and offer an EB family close to them backup caregiver duty for parents to run errands or enjoy some brief personal downtime when needed.



Comments are closed.