Where We’ve Been, Where We’re Headed

Recently, I attended this year’s annual benefit fundraiser for DebRA of America hosted by the Solomon R. Guggenheim Museum in New York City. Between the elegant setting and the graceful ballet moves of Julie Kent, the event was beautiful, and it was wonderful to see so many people come out in support of a shared goal — to raise funds to provide free supportive programs and services to families impacted by EB.

This year has seen great successes for both raising funds and raising awareness for many of the organizations who work closely with EB families, the medical community and researchers. Now many of us shift our attention to finishing up our year and getting planning underway for efforts to achieve our 2016 goals.

Many of us will continue to do what we can to make whatever resources are critical to EB families more accessible, and that includes information. One of the big events to look forward to next year is the DebRA Care Conference. This conference has a new name which DebRA hosts and invites EB families from across the U.S. to attend. It is a great opportunity for families to interact and learn from one another and for everyone to be brought up to speed about the latest treatments and clinical research outcomes. If your EB family has never been able to attend, I urge you to look into attending this year’s event in Grapevine, Texas. We will be sharing more details as they become available.

Along the way in 2015, we were introduced to new faces and voices coming out in support of those directly affected by EB — some famous and others unknown until now. Each time a public figure lends their fame to attract interest to an event or campaign, or a private individual or family invites others to take a closer glimpse into their lives, we move forward: forward in helping others better understand and in starting to break down any misconceptions that might emerge about the disease.

During the first few months of the New Year, we will be sharing all that we can about ways you can get involved in awareness events and the fundraisers we are aware of and as always, we hope to get more interactive conversation going between members of the EB community. If you have ideas for upcoming blogs or other features you would like to see on EB Resource’s blog or social media pages, please contact me at leslie.rader@hollisterwoundcare.com.

From my family to yours, may you have a beautiful holiday season and a bright new year.