Community Sound Bites

Our EB Resource Facebook community can be a great resource for sharing suggestions and offering feedback on a number of topics that impact EB families directly. We recently listened in to hear what people are talking about. This is just a small sample. We encourage you to visit our Facebook page regularly to make your own voice heard and contribute.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • When we learn about vendors offering to donate a portion or all of their profits for a particular item to EB organizations, we do our best to get the word out to others so they have an opportunity to evaluate and support them if they so choose. Last month, we told our Facebook friends about Valley Vintage Scents and their handcrafted lockets for which they donate 30% of all profits to EB-related causes. One of our members Kathleen Gravers Cornell was kind enough to share her own consumer experience as a courtesy to other members: “Great lockets and very reasonably priced…While it didn’t really have much of a scent, I was very happy with the locket. Nice workmanship and detail.”
     
  • The Facebook community is also a great place to keep people informed when there is news or resources that members should know about. When we reminded everyone in May that EB Awareness Week was just five months away, the team at DebRA chimed in: “Everyone is invited to join our virtual Facebook event here: http://bit.ly/EBawarenessweekFBevent – and if you’re planning on hosting a DebRA local event to spread EB awareness, please email events@debra.org and let us know so we can send you materials.” In April, we brought up the topic of the financial toll that EB can take on families and DebRA’s executive director Brett Kopelan took the opportunity to reach out to our community’s members to explain the registry’s role in calculating these costs: “One of the reasons we, DebRA of America, created the EB Care registry was to be able to measure the true burden of care of living with EB. We wanted to know the pharmacoeconomics as well as the financial burden placed on families. It is important that all EB families sign up for the registry and enter as much data as you possibly can.” When we promoted a group of springtime EB events in a May post, our friend Shawn Ripps Tavani made sure that we didn’t miss one: “Don’t forget about Butterfly Wishes for Ellie in Atlanta, GA.”
  • Sometimes our community can be a sounding board for members to share news about other families in need or other inquiries. Earlier this spring, community member Rochi Orbegoso Pea shared news about one family’s critical circumstances: “I just posted a plea to help 6-year-old Araianita, she needs esophageal stenosis surgery and her family is fundraising to bring her from South America to Ohio. Please let me know if you can help.”
  • Our members can be very generous and not only step forward to offer supplies they don’t need or volunteer to help out in some way but they frequently offer details about their own experiences to shed light on what may or may not work in different scenarios. In April, when we asked families about reaching out to their own schools to enlighten them about EB, Sally Contreras Mata shared her own experience: “Best thing I have ever done when it came to school was set up a “meet & greet” a few days before school started with the teacher, my daughter and I. All taking place in the classroom my daughter will be for the year. This way, she could pick her desk and be comfortable the first day in school…If my daughter’s anxiety level is diminished and she feels at ease then everything else falls into place!”

We know how busy we can all get between work, other outside commitments and some much-needed downtime and recreation, so when our members take a few moments to leave a message in the Facebook forum for others to learn from or to initiate a conversation, that means a lot to us. We hope that you’ll continue to visit the EB Resource community daily and jump into the discussions, sharing your thoughts along the way. We’d love to hear from you and so would the other members. So, thanks in advance for the conversations to come!